If money were no object...and such.

It's more FASD and special needs for today. Skip it if you'd like.

The thing about FASDers is they can be successful when their environment is set up for success. Provide the necessary support and they function quite well most of the time. This is a double edged sword. Because when it looks like these kids are doing just fine people get hesitant to pay for the services that make the success a possibility. It's the functional equivalent of saying to a wheelchair bound kid, "You get around just fine, why do you need that dumb wheelchair anyway." Well, it's pretty obvious the kid has mobility because of the wheelchair. You take away the wheelchair, you lose mobility. But somehow the same logic doesn't apply when the supports look like a Occupational therapy, speech therapy, picture schedules, sensory diet, and therapeutic parenting techniques.

So the challenge for me is to build in the right supports to help our little girl succeed without her appearing so functional that the schools won't pay for services and develop an IEP (individualized educational plan). She needs support, and early intervention is our best bet to capitalize on brain plasticity. It will require a sophisticated ability to work the system. This is a particular specialty of mine. It's how I got through college with great grades and little effort. Seriously - if there is a rule to be bent or twisted to my advantage then I will find it. It's funny that this quirk of mine could serve my daughter well.

Anyway, if I had my druthers these are the interventions I would use.

I would have Abby continue with OT, and add in speech therapy at Children's. I'd also have her receive OT and speech at preschool. Plus, she might need a para just to keep her safe, and the kids around her safe. Also, I'm interested in pursuing NeuroReorganization type therapy with Anna Buck and then top it off with iLs. Plus, of course, we need some therapeutic parenting tools for ODD type behaviors. Also, I'd like to go to the Children's carseat clinic for an Abby-proof carseat. And I think we need better locks/alarms on our doors. Plus, Northglenn's police department can give me an Abby tracking device. (You can, indeed, microchip your kids) I'm not quite sure what she will need in an IEP, but you can bet that I'll figure it out.

Link a dee loo

My blog has been just cram packed with FASD stuff lately. I do occasionally think of other things. Yet this is where we are as a family. And if you know my family in real life it's helpful to understand this stuff too. Here is a great LIhttp://www.blogger.com/img/blank.gifNK.

McDonald's Playland

WE WENT TO McDONALD's PLAYLAND!!

It was busy with moms and kids looking for a break from the heat and cheap entertainment. I was hesitant. Many days a trip like this would be disastrous. But Abby was well regulated today; I knew it. I took the risk, and .....SUCCESS. No drama. It was so utterly normal.

That's the thing...sometimes it's normal,and sometimes....well not so much. And I get all jumpy and hyper vigilant trying to guess what will happen. I can almost always "talk her down" if I catch "it" in time so I'm always tuned in and keyed up for the potential trigger that lurks. It's a weird way to live.

In other news...

I've been running. I was so pathetically and ridiculously out of shape when I started that running for 2 minutes made me suck wind. Now I can run for 25 minutes non-stop. To true athletes out there this is totally unimpressive, but this is huge progress for me in 4 weeks time. I will, indeed, be able to run the 5k when Eddie does his first triathlon.

The thing about running is it is really really helps with my depression. It works better than the meds (which I'm still on) and has the side benefit of being good for my heart. I gotta stick with it. The temptation is to do too much too soon. So far, all my body can take is 3 runs a week. My knees and shins ache if I do more. So as a person in her mid-thirties, I need to honor this. I need to take a "long haul" approach to things. In an effort to do this I'd like to start swimming. It's good cardio too, plus it's a nice upper body workout to augment the running, and low impact. Trouble is: I suck at this too. So I've decided to figure it out. To hell with looking cool. I 'm gonna just look stupid and chubby till I get it...because otherwise I'll just stay chubby because a was too big of weenie to look stupid. If Eddie can do a sprint triathlon, then I can too. I can. It's just gonna take awhile.

fasd

"FASD is devastating. What disability results in sufferers being good at small talk but without substance? Then add a kind heart but a violent temper, complex needs but no insight, a small frame with big expectations and perhaps worst of all, a damaged mind but a beautiful face."

- Elizabeth Russell

Downward Mobility

"To mature as a follower of Jesus means to be led to the same powerless places he (Jesus) was lead. It means the road of downward mobility in the midst of an upwardly mobile world. I do not say this with sadness, but joyfully, because the downward road of God is the road on which he reveals himself to us as God with us...

Nobody wants to be on the road to downward mobility. It costs too much. If you aspire to it, you don't understand it. It runs counter to the road we desire to travel - the one that leads to upward mobility. By right, we should get to pass important mile markers that measure our success - marriage, babies, career, house, better career, bigger house. We should be on our way. So why would Jesus ask if we love him, and then, if we get the right answer, promise that we will be carried to a place we don't want to be?"

-M. Craig Barnes, When God Interrupts

I've been thinking, "How do you make church relevant in culture?" The question is tricky, and the answer is even trickier. Here's why:

Doing "relevant" church runs the very real risk of becoming "McChurch, I'd like fries with that." We can become Drive-Thru Jesus.com because we want to speak to the American Consumer. So, we are tempted to make church into a product to be consumed. Makes sense, kinda. Phenomenal messages, excellent children's ministry, hip worship done well, these things DO get butts in seats. It looks like success. The problem is that once the proverbial "butts" are in seats, they stay there - mollified by the spiritual equivalent of Krispie Creme Donuts. Our church communities become anemic, malnourished and obese all at once, and we have done it in the name of relevance.

The Good News that God is With Us,and For Us is utterly relevant. But God is on the move and if we are to be Christ-Followers then spiritual butt sitting will not do. In a place like Colorado, an invitation to join a spiritual journey/adventure appeals. It fits with the culture of this place. We ski, and hike, and mountain bike, and kayak. We do adventure.

Except...

The road of the disciple is one of downward mobility. Always. And that is not an easy sell to any culture anywhere. It's one thing to tell a people, "Get off your fat asses and join the adventure." It's quite another thing to say, "By the way, the road we're traveling will likely put to death the dream you had for your life. It will be harder, longer and more treacherous than you ever imagined. In the end, it will cost your life."

"Would you like fries with that?"

McChurch, and real discipleship don't mix.

This does not mean our messages should be lame, our worship tacky and outdated, and our children's ministry pathetic. Excellence matters. But I'm not sure we can ever be trendy. "Come and die" doesn't lend itself to trendy. A promise of downward mobility doesn't make for good copy in brochures and door hangers.

Case in point:

-God called our family to adopt.
-We did.
-It was hard.
-It will become harder.
-Hard will last forever.
-Part of that hardship was the fact that the dream I had for my life had to die.

Today, we met with the physician overseeing our daughter's multi-disciplinary evaluation. I was expecting one diagnosis. I got 4. And one more looms in the future. We have a virtual alphabet of disorders with acronyms. These acronyms spell out a future full of therapies and challenges, challenges that will never be outgrown.

In our daughter we received the gift of downward mobility. Moments of this have been excruciating. Yet, I have found the quote I began with to be true. As we have followed Christ on this path of downward mobility, I have encountered the Living God more frequently, and more potently than ever before. I have met my God here, on this road littered with the skeletons of dreams decomposed.

Put that on a brochure.

waiting...

Waiting sucks.

Every time there is an unknown around the corner I get fidgety.

Adoption is full of waiting. I was so much more comfortable with the process of adoption when we were in a season of doing. Homestudy. Classes. Fingerprints. These I could do, but I hated the seasons where my only task was to wait. And there are months of waiting.

More recently I applied to have the kids enrolled in a charter school. There was a fair amount of paperwork - which was fine by me because I got to DO something. The cruddy part for me was when there was nothing left to do but wait.

Now I've done everything I can do to get this job I might maybe want. But now I have to wait. There is nothing more to be done. And hence...I discover yet again that I am not a peaceful waiter. I'd rather do than wait for the script of life to unravel like a scroll.

Funny thing. I actually feel pretty much okay with going back to work or not. I could live with either. There is an upside and a downside to both. What I HATE is the wait. I'd like to know, or at least hold on to the illusion of control by doing some task, no matter how banal.

A theme emerges, does it not? Maybe I should think about why I hate to wait, you know, while I'm waiting...

Many things and wide open space

My brain is a whirlwind. There are fragments of thoughts and new ideas blowing around in disorder. Writing is how I nail those pieces down and begin to mosaic them into some sense. Right now there are so many pieces that I've not blogged because the prospect is daunting. I'm not sure I can arrange all the thoughts and ideas into a pattern that makes sense. So this one is not for the grandparents. It's not for anyone else. It's just me. Nailing down some stuff. A first attempt at order.

I'll begin with Thursday. Thursday was the beginning of the long awaited evaluation at the Child Development Unit at Children's Hospital. I love that place. They are amazing, and they understand kids. End plug. Anyway, we spent our morning with a team of psychologist who did IQ type evaluation with Abby. Before the testing they spent time playing. The room with the testing was a pale green shade and the florescent lights were off. They fitted the table and chair size just for Abby and took breaks for "heavy work" ( a regulating technique we use at home ). Essentially, they set her up to be successful. Which, as a mom, I appreciated. But I found it interesting to watch how they understood she needs an adjusted environment. She just does. And it's work. Now, granted, all kids do there best when set up to succeed, but florescent lights and background noise wouldn't derail my neurotypical kids.

So, with Abby, it is a constant dance; we go before and behind her making adjustments along the way so that she can be successful. To most people they are invisible, these adjustments, but if we slack off (and sometimes we do) her little world quickly unravels. The psychologist got this. And they commended me on my bag of tricks. It brought tears to my eyes, because what most people see is a sometimes out of control kid, with parents who don't appear to be disciplining her. It felt good to have what I see validated, and what I do appreciated. Because very, very few people get it.

We have more testing and we'll be seeing more specialists, but the IQ testing was revealing. She absolutely aced some of the language testing. She even seemed to get some of the analogies. But there were holes in her visual spacial reasoning and her ability to grasp complex directions. The scores haven't been tallied, but they reveal a pattern consistent with data on prenatally exposed children: Strong expressive verbal skills, challenges with math and abstract reasoning.

So I am highly suspicious that we will, indeed, get a diagnosis that is on the Fetal Alcohol Spectrum. I'm glad of this, and sad. A diagnosis explains behavior. It gives me tools to advocate for Abby as far as an Individual Education Plan and public schools. It has protective value for her as an adult, and will give her access to services and support. I can look into therapies that are appropriate to this type of brain damage. BUT. BUT. It ain't going away. It's forever. And the implications are far reaching. Sometimes they will be subtle and sometimes they won't be, but they are forever. Forever feels like a long time. For her, and for us.

One of the challenges for me to accept as we parent Abby is a need for a stripped down version of life. She thrives on simplicity and routine. She always will. I think that this is boring. I feel guilty that my bigger neurotypical kids live with a stripped down, simplified version of life too. I feel like they miss out. They do miss out. Just recently, I read an article from a brain researching MD, specializing in trauma (Bruce Perry), and it was encouraging. Because he said boredom was good for kids; it's the catalyst for creative play. Play is great for all types of brain development. So those long afternoons of legos and pretend are nothing to feel guilty about. They were an opportunity in disguise.

The challenge remains though, how do we keep life simple for Abby, but allow opportunity for my older kids to stretch their wings? For us, part of the solution is Westgate. School offers respite for them, because Abby is not an easy little sister. I'm praying for good friends and fun experiences, because I cannot do it all. In the past God has brought people and opportunities into our path when I didn't have the bandwidth to meet every need. I will have to trust he'll continue to do that for us. For Eddie and I. For the "biggers". And for our peanut too. (By the way Dad, your camping trip with the "biggers" falls into this category of meeting needs I cannot. Thank you a thousand times. It's huge for us.)

Another piece of the mosaic: this job possibility. It's looking quite likely. I'll hear very soon. I ran across this position on accident, and it looked like such a good fit with my passion for adoption issues and my background in education that I applied. It's the kind of job I've dreamed about. Yet,as the possibility sits on my doorstep I find that it's not an easy decision. Simplicity and me working do not go hand in hand. It definitely complicates things. Just as the kids need respite from a life of catering to special needs, I find I need it too. And that is guilt inducing, because those needs aren't going anywhere and they do need attending to. I wonder if my decision to work will complicate things in a not so okay sort of way. Yet...it'd work great with the biggers, and I do have good options for childcare.

There are other pieces too. Like Eddie traveling, and church, and upcoming adoptions, and family etc. But here is my start, my nailing down of a few. More to come.

The jury is out...but I might like to run

Eddie is training for a sprint triathlon. Not me. I thought a 5K would be a legitimate first step from my former coach potato status. I'd never been so out of shape. It was down-right yucky. I had to do something...something drastic.

So I've been "running" (and those quotation marks are appropriate) for about 4 weeks now. I am slow, and slowly getting into shape. But I'm discovering that I actually, might actually, maybe quite possibly could like this thing. Jury is still out. I'm not committing, but I feel so much better after a "run" that it makes me want to do it again.

Really good running shoes help.
30 minutes away for kids double help.
Potential to get my fat a** in shape, or at least less fat is quite motivational as well.

If I can do it so can you...think about it.

For the Grandparents

I've been slacking in my blogging lately, so here's one for the grandparents. It's a quick "what's up" for those who care.

-Eddie is going to travel again. He starts next week, and continues traveling every week for the foreseeable future. This time he'll be headed to northern CA.

-We're going to try to squeeze in a summer vacation and crash his business trip one week.

-I was called back for a second interview for a part time job I've been pursuing. It's a cool job; I applied on a whim. I think there were a lot of applicants, and I'm surprised it's gone this far.

-We've been hangin' with the Crocker girls while Matt and Gretch house shop in NJ. They've found some cute houses in cute subdivisions (townships?), but I'm gonna miss those Crockers.

-Tomorrow is Abby's appt. w/ the Chidren's Development Unit. Pray she acts out. Really. Because so much of the time she's sweet, but we want them to see when we see her acting "off".

-The big kids are looking forward to a camp-out with Grandpa next week.

-Caleb is the winner for the "most teeth yanked" award. He's had 3 pulled so far. He's going in for 3 more, and then, after that 6 more will get pulled. 12. sheesh. Here's a quick shout out for good dental insurance....

Kota our Hungarian Sheep Dog (aka PULI) is working on her dreadlocks, cause that's the hip look for Pulik. I'm feeling sorry for her though because her coat is so hot during the summer. We may shave her down, but then instead of looking like a tough Puli, she'll look like a poodle, and Eddie is not a fan of that look..

-Haven't even started the summer reading program for kids at the library. I want to do it, but Abby throws a fit at the library, and it's anti-motivational.

-School's back in session the 20th of August. I have a feeling we'll be shocked at how quickly that sneaks up on us.