Brothers and sisters

Here's what's breaking my heart lately: the dawning, sad revelation that Oli and Mani, well ... they aren't destined to be the chummy buddies I thought they'd be.

Oli (2) & Mani (5 mos.)

Mani has surpassed Oli in so many ways.

Oli (age 3) & Mani (19 mos)

His speech. His reasoning. His physical abilities. His size. His play. His everything.

Mani (age 2) & Oli (3.75)

18 months in age stand between them. And yet ...

Oli (4) & Mani (2.5)

Oli is the two year-old, and Mani is going on three.


There are days when it doesn't matter. Days when I see them as twins, and simply do the next thing in my long list of get-'er-dones. 


And then, there are days when the blossoming relationship between Mani and Seven yanks me back to reality. Yes--these two are destined to be buddies. They are already in love with one another. Already connecting and nurturing and sharing the giggles and grins that set the foundation for peerhood.

Seven (4 mos.) & Mani (2.5)

And there sits Oli, trying so very hard to keep his footing in a world that moves faster, burns brighter, and laughs harder than he can fully understand.

OIi (4)

It is bittersweet, the innocence that Oli embodies. He is not wise to the ways of the world, and for that, he seems much younger. But he is also beginning to realize that he is being passed over by so very much.


In the end, it does not matter--this sad longing that I have that will go unfulfilled. It is God who crafts my family, and He knows the who and the why and the how. As my dear friend Benny reminded me this morning, I can only see what lays in front of me, and His vision goes farther and longer than mine ever could.


But still I mourn for the could have, would have, should haves. Even as I watch with awe and wonder the bud of a relationship that is opening between Mani and Seven ... I pull Oli a little tighter to me and try to make up for what he doesn't even know he will miss out on.


Perhaps this is what special needs parenting is all about.

Holland, revisited

I think I was in high school the first time I read the essay "Welcome to Holland," by Emily Perl Kingsley. It was printed in my local paper's Dear Abbey column one weekend morning, and I vaguely recall being somewhat interest in the analogy--having anticipated one thing, you end up with another. By allowing yourself to experience the new and unexpected "other," you find yourself embracing it, finding beauty, and, eventually, living in joy.

Kingsley's piece is one of those rare, enduring gems that follow you throughout life. Since my initial meeting with it, I've stumbled upon it countless times. I've had it arrive in my email inbox, seen it noted in publications, and heard it referenced often enough to realize that it's part of the common vernacular.

Now that I'm actually parenting a special needs kiddo, I find myself confronted with Kingley's optimistic analogy far more often than I'd like. Acquaintances who realize that Oliver is not quite the typical 3.5 year-old will often quip that we didn't get to Rome, but that Holland is a fine place. Family members smilingly reassure us that we'll find the right guidebooks to help us "see all the sights" at our new destination. Doctors and therapists ask us if we're familiar with the essay--as if this one piece of writing sums up their own philosophy of special needs parenting in a way everything else they have offered cannot.

And yet, for all of its ubiquitousness and acceptance, I have to admit: I am no longer a fan of the Holland analogy.

I feel like something of a traitor admitting this, but there it is. I can't quite put my finger on the why, but something about that particular point of comparison leaves me feeling hollow. Maybe it's something like my gut reaction to those well-meaning folks who pat me on the shoulder and assure me that I must be a very special mother for God to trust me with Oli? As if people who parent kids with special needs won a Holiness Lottery? As if I people are lining up to watch their children struggle through disabilities, difficulties, medical maladies, cognitive issues, autism?

So, so often we Christians see people who carry burdens we don't want and assign to them a particular place in the order of Everyday Saints. "She is so good with him. I could never be that patient." "I don't know how they manage with all of her issues. I can't imagine juggling all that." "Just mothering that little one looks like a full-time job. What a crown is waiting for her in heaven!" Watching a mother or father calm a tantruming pre-teen, seeing the care taken in patiently leading a clearly disabled child through relatively simple steps, listening to the litany of modifications necessary for a certain child to participate in a seemingly normal activity ... it all sounds like the work of selfless, hyper-attentive special parents. Not the kind of parents who deal day in and day out with issues no bigger than ear infection and skinned knees, but the moms and dads who know the best neurodevelopmentalists in the region and can easily rattle off a list of alphabet-soup diagnoses that are meaningless to the public at large.

Maybe most of these people are destined for mansions in heaven for their utter devotion to their special little ones. Maybe they never look at their baby and wonder "what if?" Maybe they don't ask God "Why?" Maybe it's never occurred to them--not for one, tiny moment--to long to see their child with the veil of those diagnoses lifted.

I am not one of those parents. For me, Holland is a rotten analogy. Truthfully, I'd love to go to Holland--or someplace like it--someday. I am a fan of the road less traveled, the path not taken, and the drum that beats to its own time. The place I find myself with Oliver, though, does not remind me of a set of landmarks that I should revel in. Rather, being Oliver's Momma has more to do with loving him exactly where he is while hoping, praying, and striving for him to be all that he can be.

And the Holland thing? Well ... it just implies a certain amount of acceptance that I'm not ready to surrender to. Yes--Oliver has special needs. He has cognitive delays, physical delays, medical issues, Fetal Alcohol Syndrome, hearing loss. Those are the labels that tell me where he is today, right now, at this moment. If I begin to buy the Holland analogy, I'm afraid that I will look at those labels and decide that this IS Oliver. But for me, well ... I prefer to think that the REAL Oliver is locked inside the cage of those things. That maybe, with God's healing and grace, with patience and prayer, with hard work and opportunities, with all of us pulling together and giving him everything that we can ... maybe, some of those labels will no longer stick.

I was devastated earlier this week to receive an official evaluation that all but wrote off Oliver's future. At less than four years of age, professionals have decided that this beautiful blessing shows very little promise of blossoming into a productive, capable citizen. In other words, he will stay in Holland. He will enjoy the "slower pace" and simply be. He has no hope--none at all--of ever even dreaming of seeing the sights of Rome.

I, for one, refuse to accept that. God didn't give up on me; I will not give up on Oli. The Lord pursued me, fought for me, won me. Surely I can do as much for my beautiful, sweet, loving son?

I am not a Super Mom. While I was specially chosen to be Oliver's momma, I don't think it was because I possess any particular holiness that the average Christ-follower can't find within him or herself. If anything, it may just be because I am as stubborn as they come and the Lord knew that I would not take the news of Oli's diagnoses as a death blow. Oliver deserves a chance to shine. He deserves as many learning opportunities, as much love, and as warm a family as we can offer him. My heart tells me that sitting on my haunches and letting Oli stagnate would be nothing less than a sin.

He may someday rise far beyond everyone's expectations. And he may not. But, you have my word--it will not be because no one took the time to water this tender little shoot's potential.

Labels

Mr. Blandings and I have struggled with how much to share about Oliver's needs when it comes to folks outside of our immediate family. So many things, to us, are simply a part of his story--something for him to share, when and if he chooses. And yet, we're finding, people truly need some basic information in order to help him be safe and/or to lessen their frustrations with him in certain settings.

It's hard to leave Oli with others right now. So many people look at him and say, "He's three. With a three year-old, you ..." Physically, Oli was born three years ago. This is true. Mentally and developmentally, Oli is still a very young two year-old. On some days, he is closer to 18 months in terms of what he can process. At home, this makes for accommodations that otherwise probably wouldn't be needed with a child of his age. For example, when my first three were in that four and under window, I could easily sidle off the the potty relatively alone for two minutes. I'd leave the door open, but I wouldn't expect any drama.

With Oli in the house, there are zero unsupervised moments. None. If I go to the bathroom, I must either take him with me or call for Jo to monitor him. This is a fact of life for us.

But for others, it's just not second-nature. And it shouldn't be. Unless you've had the job of keeping tabs on a developmentally-impaired preschooler, you really have no idea what it's like. I get that. Goodness knows, this is all new to me, as well. But still ... leaving him with anyone, anyone right now gives me chills. No one knows what he's capable of. Sometimes, not even me. Remember the toilet incident?

Our only "safe spots" right now are preschool (5:3 adult/child ratio), our babysitter (and we put him to bed first), and Sunday School (hyper-vigilant, closed environment). This doesn't mean that I don't trust other people, and it says nothing about the level of competence of my friends. What it does mean is that small, super childproofed spaces are best for Oli. And pretty much those three places can handle that kind of confinement right now.

Preschool has gone off without a hitch, thankfully. And our babysitter is an angel. Once Oli's in bed and asleep, she dutifully carries the baby monitor on her hip the entire time she's here. She even goes up to check every hour on the hour and make sure that he's still in bed. Granted, we've only left her with him a handful of times since he became a little more of a handful, but still--I'm confident that the combo of our house and her vigilance (combined with Jo's Mother Hen behaviors) will keep things under control.

Which leaves Sunday School.

Sunday School has been a mixed back for Oli. He loves the social interaction. He clamors to get into the room each Sunday, and looks forward to swooping trains across the track and listening to stories. We asked that he be able to stay in the two year-old room, and our Children's Director obliged. Even she admitted that moving him up was a recipe for disaster, despite her general, "Well, he seems fine to me," and "He just needs a little more time," attitude about him.

But lately, stories have been trickling back my way. Some of the classroom volunteers barely notice he's there, because when employed with a toy, Oliver has the habit of becoming invisible. Other volunteers have told me that Oliver wouldn't participate in any way, choosing instead to play the whole hour. Another said that he pestered the workers for hugs the whole time, which wasn't feasible in a room with 16 kids.

All in all, I'd started to wonder if it was time for a sit-down conference with the children's ministry staff. Time to disclose the full story (not the bits I've felt comfortable) and help them develop a game plan for keeping everyone happy and safe. I admit that I've been loathe to do this partly because I've only been able to pull myself out of what felt like full-time children's employment within the last 18 months. Going back in, laying out needs ... well, let's just say that I can see a whole lot of people saying, "Great! So you'll take his class every week?"

Which is, frankly, the last thing I want or need.

Today, as I was scanning my facebook page, a sweet woman who is a regular in Oli's class posted about how funny it was when my son dumped a pitcher of water on her 15 year-old daughter's lap. I sighed. This same lady--who is clearly enamored with Oliver--has commented before about him dumping his own water, or spilling on the floor, etc. He does it about every week that she's in there, and honestly, not a lot of people are smiling about it. (Other than the poster, who seems to get a kick out of it.) I prayed, and I knew what I had to do: this dear lady needed to be in the loop.

Using carefully chosen words, I pieced together an email to her:

Hey, Hailey! I'm starting to realize that I need to let everyone in on the "Oli loop" a little bit more ... especially if he's dumping water on people's laps!

Oliver has FAS, which means that he was alcohol-exposed in utero. His birthmom refuses to admit that she used alcohol during pregnancy, so we've had a hard time getting help. BUT--he's finally being fully evaluated. One of the key markers of FAS (and one of the hardest to work with as his mom!) is that he doesn't learn form past experiences. Consequences are completely lost on him; everything is novel and new and exciting ... every single time.

I am really not sure what I need to pass on to the folks in his SS room. We're trying hard not to label him, but frankly ... I think he may need a label so that people can help him. He's already three, but he'll be staying in the 2s room until (Children's Director) kicks him out. He just can't function with the bigger kids.

Thank you so much for your patience with him. You truly sound like you enjoy him, and you have no idea what that means to me. Oli is one of those little boys who rarely catches a break in life, and for some reason, a whole lot of people see him as more trouble than he's worth. (Just being honest.) He's an amazingly sweet, loving little boy with a big heart. Thanks for seeing that. It does my heart good. :-)

Mary Grace

I sent the email off with yet another prayer. Please, Lord, let this be fruitful.

Here's what I got back:

Oh my goodness, MG! That brought tears to my eyes. I find GREAT joy in Oli's presence. I have always known, without being told, that Oli was special. Not just because of the subtle hints in his reaction time & interactions with the other kids, but because of his sweet, sweet nature. He does everything with simplicity and innocence & then gives that little smile that communicates, "isn't that neat? I love it when that happens!", no matter if it's dumping water, watching the puzzle pieces all fall out of their respective places when he turns the puzzle upside down, or just seeing the wheels turn on the truck another kid is playing with. I'm sorry that he isn't appreciated by everyone. I think we all could take a page from Oliver's book! He is truly one of my faves and I am happy that he will stay with the two's. I would miss him! My girls love him, too. The 12 yr old plays with his hair cuz it's so straight & silky & he just looks @ her & smiles, never irritated. The fact that he spilled the water in Lizzie's lap was funny cuz she had a funky attitude that morning (a common occurance @ 15, it seems), and once he dumped his water, & she started laughing about it, the storm cloud over her head seemed to disappear. It will never cease to amaze me when parents don't treasure the little ones God entrusts us with, so the fact that Oli's birth mother can't admit she did something unhealthy to him in-utero makes my heart hurt. My husband's sister did the same thing & then said she thought she drank contaminated water for the month she went to stay with her father while she was pregnant and that's why her baby came out with so many health issues & continual challenges. Her son, Joey, clearly has FAS as well as other disabilities. Thankfully, the nurse that cared for Joey in the hospital every time he got sick from Cassie taking his feeding tube out when she went out in public, adopted him and he leads a very normal, balanced life in spite of his physical challenges. I grew up in a very unstable home and no one ever stepped in to rescue me, so kids that are "underdogs" always come first in my book and I can "sniff them out" a mile away! Don't ever feel like you have to apologize to me for Oli's reactions to life. He's perfect to me, and even more so now that I know a little more of his story. I'm just glad he was blessed with such loving parents to be that safe place for him to land when life, and people, don't give him a fair shake! I am wondering if maybe it would be a help to you (to get a break) if I just said I'd take the 2s room at that time every week? That way I could be Oli's "special teacher." I'd love to do it, and you wouldn't worry so much. Let me know. Hailey

Are you wondering at what point the tears started flowing? Yeah .. it was somewhere between the word "innocent" and the part where she mentioned his beautiful, silky hair.

My baby boy ... appreciated.

Who knew how much it would mean to me?

I forwarded the email to my husband. Tonight, we plan to sit down and talk over the offer (which I'm pretty sure we'll accept). And then, we'll say a special prayer of gratitude. Because in the midst of all of this "new to us" and "what do we do?" God is certainly, clearly, and without fear walking ahead of us. Making straight the path. Lighting the way. Moving hearts. Bringing community to our doorstep.

It doesn't look like anything we expected. The preschool, this lady (who I really don't know well at all) ... it's all so new.

But it's got all the fingerprints of God. And it's blessing us. So on we walk. One step at a time.

Flood

I was going to write about my vacation. Really, I was. I was going to tell you how blissful it was to be completely and utterly secluded from the bulk of civilization. I was going to proclaim the virtues of vacant beaches unmarked by hideous tire marks (who drives on a beach?!?!). I was going to gleefully recount how joyful it was to be without a telephone, a television or internet service. I was going to paint a picture of my idea of a perfect beach trip: nary a chain restaurant, kitchsy shop or taffy pull in sight.

But then life intruded and here I am, thinking instead of Oliver and sighing one of the deepest, heaving sighs I have ever felt wrack my body.

Your children should move you to tears. It is their right. They are beautiful, and blessed, and adorable beyond words. They are amazing creations handed over to you for a time; neither an extension or yourself nor a completion thereof--a distinct entity of their own. But still, somehow, a connected piece of your senses that hits you in the soft places and moves you to emotions you can't quite muster otherwise. It is heart stuff, this. It is tear-inspiring.

Until this morning, I have never, ever cried because of one of my children. I have cried for them, with them, and, oh yes, I have cried out to the Lord on their behalf. But never have I surveyed a moment and felt myself shaking with the kind of desperation and fear that I found myself awash with this morning. Never.

Last night, Oliver flooded his bedroom. How it happened isn't important. All you need to know is that he overpowered two obstacles and worked his toddler magic on three separate childproofing mechanisms to get to the toilet and manage this feat. Mr. Blandings and I awoke at 1:30 in the morning, put things to rights (no small task) and spent the few remaining dark hours with one ear towards the room where the mischief had been made.

This morning, after fitful, restless sleep, I found my way downstairs, the incident still on my mind.

How, Lord, can I parent this boy? Show me, Father, because I am flying blind here. He's never done this kind of thing before. And he's not even three yet! This is going to get worse, isn't it? Help me, Jesus. Help me be his Momma.

And with that, I opened the door to my garage and stepped out into my flooded schoolroom.

My schoolroom, people. My schoolroom.

There are few things in the world that I have a sense of connectedness with. Strip me of my house, my car, my favorite black Old Navy t-shirt. Take my Kitchen-Aid stand mixer. Burn it all. I don't care. I could walk away from it all and feel nothing but a lifted weight.

But my schoolroom? My books?

The tears were real and they were painful. My feet tread the soggy carpet as I took stock: our entire Core 5--with some of the books that helped cement our call to Nepal--was completely awash. My used IG's, which had been destined for reuse: limp. Our beloved, much-used copy of Usborne Time Traveler ... so wet that the once-hardback cover had disintegrated to mush. This doesn't even mention all of my books, my treasures--the ones I was saving for special read-alouds with my kids--that are now molting in a box on the curb. My beaten, highlighted high school copy of To Kill a Mockingbird will not be passed in the hands of my own high schoolers, it seems.

And amid all of this: oh, Oliver ... what does the future hold?

Oliver has FAS. I have said this before. What I have not said, what I have not had to say until now, is that the primary hallmark of FAS is a complete and utter inability to learn from one's actions or to control one's impulses. FAS, in a nutshell, is brain damage. And friends, you do not grow out of brain damage.

Oliver is loved, adored, and cherished in our home. He is a valued member of our family, inseparable from us. His place in our hearts is not at risk. But, nonetheless, our hearts break. Because we know that this is but the first taste of what we will experience as we watch Oliver grow and yet still remain, in many ways, the toddler that he is today.

I can't replace our books. The cost of buying them all again is simply too much. But, praise God, Oli is safe. This time, he did no damage to himself. This time, he came through unscathed. And that is far more valuable to me than any SL Core could ever hope to be.

But my heart knows there will be a next time. And I'm praying now--constantly--that God's hand hovers over him, and pulls him back from the falls and scrapes and dangerous places.

So today, I cried because of one of my children. But I also learned a whole new way to pray. I learned the kind of total supplication that one must enter into when the odds are impossibly stacked against you. I have, I think, come to the point of total, utter dependency on the One who chose the members of our family by birth and adoption. If the cost of all that is merely a few boxes full of book, ought I not be grateful?