Certified Waiver Option Providers

That's a whole lotta government speak.

I mentioned a couple of weeks ago that we would soon be interviewing folks to serve as our sons' certified waiver option providers.  Here's the back story.

About 10 or 12 years ago, a friend asked if our kids were on The List.  I said I have no idea, what's The List?  This, said she, is The List your kids with special needs must be on in order to get care (a place to live) when they become adults.  It was her understanding that in order to get services you had to be at the top of The List (TL).  So.  I said how do we get on TL?  She said call your case manager at the County Department, which in our case is now called the Lucas County Development Disabilities Board (LDD.)   I remembered that long before that, we had contact with LDD, because our kids are adopted through another county agency and they connected us.  At least I think that's how we met, but it might have been through the county's special ed pre-school program.  Quite honestly, those days are a blur now.  There's no learning curve for this.

I spoke with caseworker Susan, who said that TL is indeed the roster of folks who need various support services, either as children or adults.  Our kids lived at home so for the time being that aspect of their lives was okay.  But what if?  we keel over and die? we are medically incapacitated? we just plain get too old to care for the boys?  Then what do we do?  Enter Certified Waiver Option Providers.

Lucas County Children's Home

In the long ago past, children with special needs were shipped off to homes, usually before they entered school.  Parents were told that it would be best for the child and best for the rest of your family.  This was the norm, and was considered the Best Practice of its day.  But its day came and went.  Many brave parents took a stand and said, "We know how to best care for our children, and that means they should stay at home with us."  A radical concept 50 years ago.  Children with special needs were 'out of sight, out of mind.'  My very best friend had an older brother in this situation, and we were BFFs for 4 or 5 years before she told me about him.  How unimaginable today. The other part of that story was you had to disown your kids when they turned 21 in order for them to receive any services and they had to go to a Home.  Talk about adding insult to injury.

But then how to care for your children at home presented its own set of problems.  Lots of problems.  Every thing from school to babysitters to diet to medical supplies to diapers to transportation, you name it, it was a problem to over come.  I thank God everyday that other brave parents fought those battles and came up with creative solutions.  And if not solutions, then at least systems to work out the problems.

For us the problems that remained were school and transportation. (The alleged director of special ed in our district was known as Cruella deBeck.  It's the perfect mental image of the witch.) Our school battles were legendary. Our battles have helped some of the kids who are coming up now, although since every child is different, there's no "one good solution".  We still hear from families who are struggling, trying to squeeze out every bit, every minute of good stuff for their kids, while they can.  I could write for days about our school struggles, which continue to a lesser extent these days.  Lesser because we're getting tired of fighting the system. Sad and true.

Transportation is our other problem.  While there are services available, we live 30 minutes from anywhere.  So that's a minimum of an hour in the car, with two screaming kids with autism.  It simply wasn't worth it to put up with that, in order to see someone for a 15 or 30 minute appointment.  The payback just wasn't there.  And to do any of that after school was totally out of the question, because our kids used up every molecule of 'good' that they had at school.  By the time they got home, their 'good' supply was completely depleted and they were running on fumes.  Add to that, our kids were always the first kids on the bus and the last ones off.  Not a good situation for anyone.  Even now, FTD gets on the bus at 6:35 a.m., and home at 4:15 p.m..  How many able-bodied and minded adults can stand that kind of day?

Back to our story.  When I spoke with caseworker Susan those 10 years ago, she said yes, both boys are on The List.  I said so what now?  She explained that all of the folks who might need services, who are known by the LDD, are placed on the list, taking into consideration the child's age, severity of need, and parent's ages. So our kids are lower on the severity side of things, but DH and I are way up on the age side.  As I was talking to Susan, she said, "Some of the parents of our clients still have their adult children living at home and the parents are in their 60s!"  I said, "Um, DH is now 61 and I'm 47, and the boys are 10 and 12."  She said, "Oh, honey, you just shot right to the top of The List."  Whew, the safety net was out.

And now here we are, ten years later.  The boys made it to the top of the list.  (Bittersweet, because it means someone who was receiving services has passed away.) And given that our current alleged governor is trying to get rid of Big Government, he's eying the services for people with special needs.  Jerk. Our new caseworker Bill is pushing us to get lined up with services, in case Gov. Asshole gets his way.  We're hoping that folks currently receiving services won't have those services cut, which Gov. A-hole also suggested.  Jerk.

So now we have to make some decisions.  None of these are binding for all time, but if we can get a good fit now, it will give the boys long term stability.  We worked with Bill to create profiles and current needs of the boys to give to providers. Several have responded to our inquiries, and we've interviewed a couple. 

So to make a short story long, we're hoping to find 'friends' for the boys at this stage of the game.  More on that later.  Gotta go pick one up from school now, he says he's sick.  Tired and weary is more like it, I imagine.

(P.S.  I'm not using the real names of caseworkers and providers.)

Quadruple Dose of Autism

Whoa.  Just when I think it's safe to go back.... I've had enough time to cruise my blogroll (which I don't in the summer) and found a couple of interesting articles.  Well, the first is from FB...one of my grand-nephews has autism, along with a co-morbid thing called PANDAS.  Holy crap.  My niece is sick and her son's symptoms worsened at the same time.  Been there done that, doing that today.  Fortunately, my son can take care of himself with his demon-o'-the-day, but I had to pick him up early from school.  So since we've been back he's managed to go to school for one whole day and 2 half days.  Sheesh.

The other was an article from a fun crafty blogger (how can you not love a blog called "Crap I've Made"?)  One of her sons has Aspergers, which is one of the forms of autism.  She noted that getting family pictures is a challenge.  I've been able to get pictures, which is a blessing.  The weird thing in our house is that neither of the boys will look in a mirror.  Scares the hell outta me, too, but for entirely different reasons.  At least I have reasons (Okay, it's those crows feet.  Or as I prefer to call them, laugh lines.  I must laugh a lot.....)

So here are some of my fav's of the boys: (And Char, you'll get pics like this, too--hang in there!)

FTD at the zoo.  I managed to get him to uncover his ears.  Still does this today. Oh, and FTD is the one in the shirt, even tho he's hairier than the sloth bear behind of him.

FTD the First Class Scout.  I used this pic to make postage stamps for his Eagle Scout Ceremony invites.

DD the baker.  He used to watch Bobby Flay all the time.  He still tries to cook, but the reading crap gets in the way.

DD's "Senior" Picture.  Unbelievable on so many levels.  First of all, he dressed up for Geezer Day during Spirit Week. Second, that he went through with it.  Third, that he let someone take his picture. Fourth, he was really thrilled that they put this in the year book.  Holy photos, Batman!

Autism Sucks, Dental Work Not Far Behind.

There I've said it.  Again.



There are days when we live relatively comfortably with autism.  Not many, but some.  But no matter how hard we try to ignore it,  it's there.  Damn.

Some days are better.  No fighting, which in our case is more brother related than autism related, no hassles, just a family doing family stuff.

Then there are the todays.

FTD had his wisdom teeth pulled.  I realize that for many it's a right of passage type thing.  How many of us had our third molars pulled in our college years?  I sure did.  DH, too.  But last October when FTD first complained of a toothache, the whole wisdom tooth thing didn't even occur to me.

FTD never complains about physical pain, unless it's way beyond what you or I could bear.  Last year when he had the flu, it wasn't until I found him lying on the cool tiles of the bathroom floor did I realize how rotten he felt.  He never let on.

I didn't know about the teeth until last October, when we were at the Scout Council Camporee celebrating the 100th anniversary of the BS.  We were getting ready to head to the Big ToDo, and he suddenly went into near panic mode.  We stayed behind, although in hind sight, we maybe should have packed up and headed home then.  But he said he wanted to stay and would take a couple of Tylenol instead.  (As an aside, it was announced that night FTD's beloved troop leader was selected to represent the Erie Shores Council in the BS Hall of Leadership, one of about 300 selectees nationwide.  Unbeknownst to me, someone had clued the powers-that-be in to the video I did of our Parent's Statement on his Eagle Application.  That letter was then used as the nomination letter for his leader.  Wow. Mark was presented with his award that night, and we missed it.  Damn. Aside #2, a mom of another boy with autism saw the same video.  Her son's leaders/District/Council were telling her that he couldn't really earn Eagle.  His COH is in May.  I wish FTD and I could be there....)

Back the the tooth saga.  In the past, we've used a dentist, Dr. T., who is not among our insurance providers.  He's a great guy, good friend, terrific dentist, but also not cheap.  At all.  We decided it was time to find someone within our insurance, and with any luck at all s/he would also be a Medicaid provider, so when the boys are booted off our insurance they could continue care and not have to go through the trauma of a new doctor in their lives.

Lo and behold, one of the two dentists in our other town is a provider.  She, Dr. N., took one look and said, "Well, that tooth needs a root canal, and as jumpy as he is, you'll need sedation therapy to get it done.  And I don't do sedation therapy."  Okie dokie.  So now I have to find a dentist, Dr. B. who is a provider and does S-IVs.  That took another month of phone calling and web-searching.  By then it was Christmas, and the good doctor was off playing golf (I'm quite sure) but we got FTD an appointment in January.  This appointment involved the anesthesiologist who specializes in dental IV stuff. She also gets paid in cash on the day of the treatment.

The weather couldn't have been much worse the day of the appointment but we made it.  (By the way, the doctor hilariously calls his office the dental spa.  Seriously? Is that why it's so expensive?)  They started working on him, in an attempt to fill 'several' cavities in the back teeth.  But they couldn't goof him up enough to get in there.  "What's that instrument called? What does it do?  Where did you get it? Why are you doing that?  When will this be done" and on and on.  The doc gave up.  There goes my $325 for S-IV that didn't work.  And he still needs a root canal. But the doc has a new idea.  After all, since his wisdom teeth are coming in sideways, you could have them pulled by Dr. S, along with the rotten tooth.  Then while he's still under from that, I'll fill the cavities. Sounds like a plan.

We call Dr. S.  He's booked until March.  Surprise, surprise.  We meet with him.  He says that the wisdom teeth and rotten tooth pulling will be covered by our insurance and Medicaid.  The cavity work, called dental restorations, mind you, would also be covered by our insurance.  The only thing we might have to pay out of pocket was the cost of the dental suite, so Dr. B. could do his thing. Okie dokie,  I'm thinking this will run us another $300.

Who knew I could be so wrong.  The cost for that would have been $2600.00.  What. The. F.

Cancel Dr. B.  Go back to Dr. T. and just get the damn thing fixed once and for all.  Dr. T. says, yeah, pulling the rotten tooth is a good idea. But says he, he can come in 'after work' at 1 p.m. and get the three cavities in his front teeth filled.  Front teeth?  What about the "several" cavities in his back teeth that Dr. B said needed to be filled, I thought but didn't say out loud. Dr. T said he could do it with laughing gas and a Valium.  For FTD, not me.  We did that last week.  Pretty dang easy.  $300, please.

So finally, the wisdom teeth came out today, along with the rotten tooth.  Only took us 6 months. And now, FTD is goofed up on vicadin or something, swelling up, drooling blood and slobber, and trying to listen to my iPod with an ice pack next to his face. There's nothing I can do for him for now, except to keep the ice cream and pudding coming.

And hold his hand.  It's what Mom's do.

The Non-Storm

After a week of hype, the storm was only scary stormy here for about an hour. We got 4 nice fluffy inches of snow on Tuesday, and then Tuesday night when the 'dry slot' got here around 1 a.m. the winds came with it. It roared so oddly that I opened a window to listen. I thought there was truck stuck out front or something. The wind blew straight out of the north, pelting sleet on our bedroom windows, where there in normally no moisture. But after that, we ended up with a couple more inches of nice snow and that was it. Just to the north of us, they got more ice--schools are still closed up there today, and there was fatal car accident this morning. But here, all is well. No major loss of power, and the roads are in pretty good shape. It's cold though~~we aren't used to those 7 degree mornings. I can't begin to imagine how my friends in ND, WY, and MT deal with the minus 30s that they've been experiencing.

We did have a classic DD moment during all this. When the low pressure front moved in on Tuesday night, DD went freaky on us~~really, really weirdly cranky and just plain mean. After he finally crashed, I looked at the tv and there was the meteorologist saying that the low pressure front had just arrived. DD and FTD both have sixth-sense type reactions to various weather fronts. This one was a doozy.

And on the upside, I started DD's hobo signs quilt. The blocks are only 6 inches (5.5 finished size) so it will take 110 plus the sashing to make a double size quilt. There are 55 blocks in the book. So I'm making doubles of each. Yesterday, I made exact doubles, but as time goes on I might mix them up some.

The blocks are designed three different ways: paper piecing for some, regular piecing for others, and applique for the rest. The artist took the hobo signs and put a more 'quilty' spin on them. Since DD has autism and is a boy, he's more interested in the signs looking like signs. So I changed a couple so far to look more 'realistic.' Actually, it was easier--the ones I changed had lots of nasty little triangles. I try really hard not to do nasty little triangles. They hate me. I hate them. (Yeah, I hear ya~~practice practice practice.) And did I mention that I don't know how to paper-piece stuff yet? So I'm actually enjoying looking at new ways to do the blocks.

Here's the first batch. One of these days, I'll label them, but until blogspot stops messing with the hyperlinking dealie, I'll just add the blocks. You figure them out. :)

Another Day, Another Party

When DH and I designed our house, we knew we wanted space for parties. We sort of gave up having cozy little spots, but the design has worked out wonderfully otherwise.

Today's party was a social outing for the kids in FTDs class at school. All of the students have special needs, ranging from multiple issues to deafness to Down Syndrome to autism. We planned this as the Cabin Fever party. We had hoped to go out back and get a good ol' roaring fire going and roast hot dogs and marshmallows and have cocoa, but since it didn't go above 15 degrees today we just stayed inside and had sloppy joes and cocoa and ice cream sundaes. The kids played with the Wii and xbox and the grown ups had a chance to just hang out together, not worrying about what other people think of our kids. We don't get many opportunities like that.

FTD thought maybe 5 people were coming~~his teacher, 3 kids, and a parent. So when 18 folks showed up.... complete with walkers, wheel chairs, canes, what ever, it was quite a crowd! And they stayed over an hour and a half later that we thought. FTD doesn't usually do parties--too much unpredictable commotion. But he lasted nearly through to the end. We had plenty of food and a really nice afternoon.

And now I'm pooped.

Tomorrow we're helping a kid in FTD's Scout troop with his Eagle Court of Awards Ceremony, so that will pretty much shoot the day for us. I was hoping to get back to the sewing machine, but since I had to clean yesterday and this morning, and will have to again tomorrow morning, . . . well hells bells. Maybe Monday.

The 12th Day of Christmas, my Son came to me.

Nineteen years ago, on the 12th day of Christmas--January 6th--we finalized the adoption of our older son, FTD the special delivery. He came to us in the dark, early evening, during one of those snow showers that makes you glad you're inside. We heard about him 24 hours earlier. He was supposed to show up right after school. I was teaching fourth grade at St. Richard Elementary in Swanton at the time. My class had scheduled a press conference, of all things, to announce the opening of their community recycling center. I had to be there that day, to tie up loose ends, get my lesson plans in order, and explain to the kids why I'd be gone for a while.

We didn't have anything for babies in the house. CSB (the local child welfare organization) staff made it clear that there would be no healthy white babies coming through their doors. We said fine, we'll be very happy with a couple of rowdy little pre-school aged boys. So we had two twin beds, dressers, all sorts of stuff ready for toddlers. When our caseworker said the child was 4 days old, did we want him or not, all I could think was, "What's wrong?" She said, nothing and since he's healthy the hospital wants him out a.s.a.p. .

Holy cow. I've always maintained that you can never find a ranger when you want one, and I couldn't find mine. He was closing gates in the sloppy snow. When he got home, BadAmy came over, too. She was just 21, and needed more cash for college. Talk about a weird evening, college tuition and diaper pails all in the same conversation.

We decided to give it a go.

I got to school early the next morning and was greeted by a co-worker. She said, "Why are you here so early?" "I'm expecting." "That's fantastic!! When?" "Today at 3." Dead silence.

Baby didn't arrive at 3. We waited. We paced. We looked out the window at the storm. Our house was on a road with no other homes, and for city folks, it always seemed to be so far away from civilization. And yes, it is dark out here. All sorts of horrible scenarios raced through my head. The hospital changed its policy. The birth mother took the baby and ran. The agency found someone else. . . . the list went on and on. Finally, out the window, I saw two sets of headlights, slowly creeping down the road. Our caseworker came with the baby's caseworker to be sure they could find our house. The baby had spent the entire day at CSB, where there are lots of kids, but not too many 4 day-old, 6.5 oz. babies. He so enamored the staff that they didn't want him to leave. But he had to come home. He had a borrowed onesie, 2 bottles of formula, couple of diapers, and a quilt. That was it.




During that day, my sister had rounded up the troops and by the time we got home, there were bottles (I had no idea how to use 'em), diapers, clothes, car seats, high chairs, etc. etc.. (Baby crapanalia, I calls it.) We didn't have a bassinet, but like so many babies before him, he fit nicely into a dresser drawer.

The next three weeks held few memories for me. It's like a dream now. We did run into some issues later, given that he was our foster son, in a program called "legal risk adoption." We nearly ran that risk, but just under a year later, on Epiphany, he was ours. What joy.


Yep, the gifts of the 12th day of Christmas are the best.

A Quick Trip Home

I've mentioned before that I don't often fly for trips or vacations. I prefer the car or the train, so I can see what there is to see out there. I also like to stop hither and yon and see what stuff the locals like in their own communities--especially if there are Junque stores and quilting shops.

But for FTD's "graduation" a flight home was necessary. DD and I left Bozeman at 1:00 Mountain Time and landed in Toledo at 10:00 Eastern Time. Amazing. And except for severely twisting a knee standing up after 4 hours of sitting, all is well.

Ohio is green and lush and humid. We left Wyoming in cold and slop, it's sunny and warm here. I know I shouldn't be amazed about this, but I am. Some folks take flying through time and space for granted. Those of us who don't do it often continue to stare out the windows, trying to pick out landmarks below, instead of looking sullen and bored with the whole affair, acting like the article in the journal is the most important thing in the world. (I suppose if the person reading is a brain-surgeon and the article is about the next day's surgery, well, that's okay.) But come on, traveling by air is remarkable (and probably not really possible). Do me a favor and act amazed about it.

DH and FTD have enjoyed being bachelors. They eat when they feel like it, didn't bother with all that cleaning crap I insist upon, and enjoyed the quiet. FTD finished his classes, with DH sending him to school even on Senior skip days. I would have let him play hookey, since it's part of the 'experience' of being a Senior. DH has no concept of social life, and since FTD's even more clueless, I guess it all worked out. Sigh. FTD will be in high school for two more years (maybe), so this social graduation is an exercise in just making it this far. When we planned his Eagle Scout ceremony last spring, we had in mind that that would serve as his "coming of age" event. And it was a great day.

Tomorrow will be bittersweet, more so for me that for most parents. Something like 90% of the AW grads will be going on to college or the military. My son goes back to 'job skills' training in high school. His name can't be published in the program, so as to protect him if our insurance company or the draft board decide he's out of school. All of the kids get blank folders tomorrow, but Tommy's will stay blank for at least another year. In a perfect world, he'd be able to get better insurance (and after getting several bills this winter, Medicare might actually be better), and a job where he's treated as a valued worker, not just the token disabled guy. In a perfect world, he'd fall in love with a charming young woman in a few years, and they would embark on a journey together. But this is our world. At least FTD is in love with me--that's one more person than many folks with autism can love. And I will love him and care for him until our dying days, high school diploma or not.

T-Minus 4 Days and Success!

It worked. Two of DD's teachers pitched the idea of staying at his regular high school for another year, and he bought it. Wow. I am such a wizard. It really wasn't as hard as we thought it would be. His teachers added a couple of incentives--one of his jobs next year will be as an office monitor, the kids who run notes around the building and stuff, and he's now "training" to be a gym assistant next year. And according to him, he'll get to drive the golf cart around as part of his gym job! What!!!!!! omg. If they think he can do it, more power to him. So DH and I are really pleased that the system is finally working for him.

I took a busman's holiday today and drove out to Magee Marsh to check out the warbler action. I had more fun watching the warbler-watchers than anything else. I did get glimpses of 2 birds, and took some pics. I put my contacts in before I left, but they must be really dirty because I had to take them out when I got there. Taking pictures with glasses on is a pain and I'll have to re-learn how to do it. And our long lens is hard to focus. The auto focus is really weird, so I keep it turned off. But I also haven't come close to mastering it with or without glasses. Something to work on this summer.

Mystery bird pics-- since everyone else was taking pictures of them and going, "oohh" and "ahhh" and "great bird" and today's most uttered phrase, "That's a lifer for me" I decided to post these crumby pictures. Feel free to post id's for me! More (and better pictures) later.

Kudos to Kim Kaufmann for pulling off the "Biggest Week in American Birding." I have long maintained that if you want to promote something just print up glossy, full-color, tri-fold flyers and it becomes true. Kim went waaaaay beyond that to promote this. I have also long maintained that something like this should happen. My hat is off to Kim, and Julie Shieldcastle (founder) and the Black Swamp Bird Observatory. For those of you who don't know Kim, picture me, but on heavy duty steroids! Way to go, ladies!

T-Minus 6 Days and Life Interupts

The good news: We'll have plenty of room in the cargo trailer. The bad news, a really tough school decision looms again.

For a couple of years, DD has said that he wants to go to Penta Career Center, the local vocational high school. As an added bonus, they've moved into a beautiful, amazing new building with all the coolest new stuff. DH and I thought we knew that the programs were all about. Last week we met with reps there and started being able to read, or listen, between the lines.

Kids in with disabilities are usually entered into the "Skills Center" where they learn "job skills." What we didn't pick up in our other conversations is that the kids in these programs aren't exposed to much in academics, or in particular careers. It's more a matter of finding a task that the child is capable of doing, not really picking up career skills.

First, remember my posts about parents of kids with special needs being in a constant state of grieving. Here we go again. We understand and recognize that our kids will probably never be rocket surgeons. Or brain scientists, either. But we still hold out hope that they will be able to find jobs with a higher level of skills. All parents want that for their kids. But now that we're nearing the cusp of adulthood, we're becoming painfully aware that even if we push and shove our kids to do more, they will never be 'fully employed.' Ever. So why do we worry about it? Why don't we just let them relax and enjoy the pleasures they do find in life? Why do we think our kids will be able to find jobs when there are plenty of able bodied and able minded folks out there? But even knowing that, we now hope that DD can stay at AW another year, so he can have another shot at picking up some academic skills.

Selling this idea to him will be tricky. Really, really tricky. I think--I hope--that if the teachers he loves at school pitch the idea to him, he might go for it. They'll have to be completely sincere and fully believe that it's the right thing for him. I've only been mulling this idea over for about 24 hours, but the more I think about it, the more comfortable I am with it. If only. . . .

Fingerprints! I Now Have Some!

It only took the fibbies 7 tries to read my fingerprints and it seems they have succeeded. At least I'm cleared to begin work. . . I'll double check to see if they were readable or if I was adjudicated out of hand again. At any rate, I'm cleared for take off!



I've painted the inside of the cargo trailer--for no other reason than it's prettier. Sheesh. It's just nicer to be shoveling junk in there. Even Madison Wolf, Hayden Bison, and Lamar Bear like it better than the unpainted version. I put the carpet back in, am gathering stuff like lawn chairs and some other goodies. Tomorrow after school, I'll have DD start bringing the boxes up from the basement.


I've put the sewing goodies under covers for the summer, which was hard to do after visiting the Sauder Village Quilt Show this morning. Holy cow, there was some drop dead incredible stuff. I might go crazy next year and enter something just to say I've entered something. One of my friends won a ribbon in the challenge division. I'll look into that, too.

DD and I pull up stakes in 11 days. It's crunch time, but the things that are left are the hardest. My office box is always out of control, as it is again this year. Packing my clothes will be easy as will DD's but FTD and DH need at least 3 more weeks of clothes here, but DH wants me to take his summer duds with me. That will be a good trick, since FTD doesn't have enough clothes to make that happen. DH does, but he always over packs clothes no matter what. And we need to decide what camping gear to take. We either take too much and don't use it, or none and wish we did. There's not much middle ground here.

Speaking of the boys, we had FTD's final IEP (Individualized Educational Plan) meeting with the Anthony Wayne Schools today. Thank God. It has been a brutal process. I've only heard of one family anywhere who has had smooth sailing through the whole deal. Only one. There's something very wrong with the system still. DD's is next week and that will be much nicer.

FTD will get to walk across the stage for his 'social graduation.' Had AW done their job properly, he'd have enough credits to actually graduate, but they figure kids with special needs don't belong in the AW building, so they don't bother. I've been harsh on the district before and now that we're nearly done with them, I'm not feeling anymore charitable towards them.

But the saddest part of the whole mess is that even after getting job training at the vocation HS for the next 2 years, my kids will probably only be employable in sheltered workshops. The job market totally sucks for able bodied, able minded people--what chance do my kids have?

Did I ever mention that grieving is an on-going part of being a parent of kids with special needs?

The up side is that we're hoping the boys can get seasonal employment in the hospitality industry where ever I work. Cross your fingers. And come on over and help pack the trailer!

Yet Another Rock

Yet another issue with having kids with special needs is trying to figure out just how sick the kid is or isn't. This is a tough one for all parents, but for us, it's worse.

Take FTD, for example. He never complains about anything. Well, except he complains about DD a lot. He tries to please everyone. After he hurled on his brand new carpet earlier this week, we just assumed he was over-stimulated by new carpet, new bed, new position of bed, new room color, and so on. We carefully included him every step of the way and took it slowly, letting him absorb all the new stuff gradually. He didn't have a fever and didn't complain about pain anywhere. We let him stay home from school on Wednesday (despite knowing that we'll hear about it later from the school. It's about time for the "Your child should be in school more" letter that we frequently receive. No duh.)

He didn't eat much, but then he usually doesn't eat a lot during the day--a side effect of one of his meds. He seemed a bit off, but again, I chalked it up to nerves. He was starting to have diarrhea the following day, which is never fun. But it kept up. Not alarming amounts, just annoying amounts. Friday there was no school for anyone and he seemed better. This morning it hit the fan again. (On a Saturday, of course.) I finally asked him if he needed to go to the hospital to fix it. Yep, he said, take me now. That's nearly screaming for him. So 2 x-rays, 1 CT scan*, and 4 IVs of saline later, we're still at the hospital. This is his first overnight, and hopefully his last for many many years.

The upshot is that he either has a bacterial or viral intestine infection. Hmm. A type of flu. The type for which he didn't get a shot. I really didn't see this one coming. Had it been someone else, they probably would have been screaming and yelling and moaning and groaning, but not FTD. He's my trooper.

*Add a new funny story to my sidebar list: He got done with the CT Scan and said it was like being stuffed inside a roll of toilet paper! Isn't that just the best description of it you've ever heard? That's my boy!

A Rock and A Hard Place

Having kids with special needs means our lives don't follow anything that vaguely resembles a normal schedule. There is no typical path for us to follow--you know, high school, then college or a gap year then college, then jobs, marriage, family. . .

We have to keep our kids in school somehow until they turn 22, because they won't be covered under DH's health insurance. Yes, they are both eligible for Medicaid, and we do use some of the services available to us from Medicaid, but we still prefer they be on our insurance. (For example, their psychiatrist isn't a Medicaid provider so who knows who we'd end up with--and our guy has been with us for over 10 years.) Neither of the boys will have a great deal of success in a college setting. Despite advances in support for kids with disabilities in colleges, I don't see it happening for our kids. They will forever be in minimum wage jobs, doing something they really don't like. I've mentioned before that being a parent of special needs kids means being in a constant state of grieving and here it is again.

FTD has now been accepted into the Job Skills program at the area 5 county vocational high school. Next summer, and yes I do mean next summer--August 18, which is utterly stupid, he'll start there. He honestly believes he'll be taking at least one or two drafting classes, which he loved at his current HS, but what he'll really be doing is cleaning and sorting and stuff like that in various businesses around town. I truly am thankful that there are programs like this for kids. But it utterly and completely breaks my heart that it's MY kid who needs it.

Part of me just wants to tell the schools to shove it, and to keep him home where I can love him and care for him and tuck him into bed every night. We could chuck all this school schedule crap and get him a part-time job at YNP again like he did last summer. The safety net is there for him, and we'll be able to provide financially also, so why do I put all of us through the torture that schools present? And why do I have this gut feeling that in the long run it won't make one damn itty bitty bit of difference.

Too Early to Pack?

Yes, Ranger Anna, mid-February is too early to pack for YNP. I had to stop myself from buying food staples the other day. I did pick up a shelf thingie for the bathroom in the apartment and put it in our cargo trailer for safekeeping.

We sort of have a plan for this summer. Being a seasonal ranger with kids who are still in school is on the unusual side, especially when school and park are 1700 miles apart. If our kids were typically developing, it might maybe be easier. But not by much. In the past, when we went to TR and Acadia, we just pulled the kids from school early and went back late. We figured if the truant officer wanted us, they knew exactly where to find us. Because of the kids' disabilities, they don't attend 'regular' classes per se. Our philosophy is that the kids can learn more tooling around the country than sitting in a boring classroom. Yet dragging kids with autism all over the place runs the risk of messing with their need for routine. Fortunately, very fortunately, for us, this type of disruption to schedules is well tolerated by the boys. I don't know if it's because we resisted tight schedules and rituals, or if they just don't have a propensity for it. School districts, however, want everyone and everything to be on one schedule--theirs. Tough tookies for them.

This year, FTD will 'graduate' from HS. He has more than enough credits to actually graduate, but if he isn't a full-time student, he looses DH's insurance. Medicaid will cover him (as long as he doesn't have more than $1500 in his bank account on the first of every month) and for that we are thankful, but we would still rather he be on our insurance. He'll attend the local vocational HS for hopefully two years. He'll age out then. They have a program for kids with special needs, helping them to acquire skills needed in the world of work.

Since it involves changing schools and learning new routines, we're fairly sure he should be there in the fall. Make that, in the summer. School starts on August 15, which should be criminal for a district that purports not to be a year round school.

DH and FTD will stay in Ohio, while DD and I drive out to work. DD will only miss three, maybe four weeks of school. His teacher sends packets along for him to work on. And I make him take care of the budget, miles traveled, etc.. It looks like he and I will fly back to Ohio a couple of days before graduation.

Then a couple of days after graduation, FTD and I will fly back out. DH will either drive out or fly out with us. We're still working out the issue of one or two cars. We've always taken two before, so the boys could go play while I go to work. I've never had access to a company car to get me to and from the office. At YNP, I can walk to the Madison Station and a car is theoretically available to drive to West. But if we don't get 3 cars for the crew, there might not be one available--maybe. One of the other rangers and his volunteer wife work with only one car, also. Last summer, he usually had dibs. But if DH and FTD need to make a run for something, and two of us rangers need to get to West at different times. . . well, it could get dicey. I'd love to get a scooter instead! We'll see.

But wait there's more! In order for this to work, we have to find someone to stay with DD here in Ohio. He can attend the day program at Bittersweet Farms, a nationally renown community for folks with autism. Best news is that it's just a couple of miles from us. We've got interviews with a couple of fellows, so that's looking promising. The apartment out west is just too small for two boys with such different needs. DD is the center of the universe (just ask him) and having to share a tiny bedroom, which was designed for one person, is tough. He also has issues dealing with both DH and I at the same time. We send subtle and different signals, being, well you know, parents~~ and he has trouble reading reading them. That makes him confused and angry. He takes that frustration out on FTD usually. And as DD would say, that no good.

And he'll go to the vocational HS next year also. Hopefully, he'll be there for four years. Keeping him interested for that long will be a good trick. If he stays home he can start at the new HS with no problems--except for the fact that sometime this summer, I also need to become his legal guardian. I might need to fly home for two trips this summer. I so wish the boys could just both come out and spend the entire time with DH and I. Makes me go back to thinking we either need to look to buy/rent/lease a place in West or just haul them out of school and not worry about full time jobs for them. Or I have to get a real job. Not. I did apply at CUVA, since our YNP jobs weren't posted for so long. I suppose if I got a GS-7 over there, we could make it work. Or a GS-5 or 7 at Perry's Victory. But that is unlikely to happen, since the tower will be closed this summer for repairs. Drat.

All this makes my head hurt. Too much thinking! Way too much worrying. Tomorrow, I'm going back to thinking about silly things.

Ups and Downs, au deaux

The past several weeks have had ups and downs. But today, I introduce our newest "UP!"

Draven Gage Veal (yep that's his real name) finally made an appearance. All 10 pounds, 7 ounces of him. He sprang into the doctor's arms using his 22 inches of springy babyness. My niece is just barely my height, so the docs decided a c-section would be safer for both Mama and Baby. I hope the little guy and his family can get settled and squared away quickly. Let's see, this makes Great-kid #17.

And I get to cross some goodies off my UFO list--curtains for all the windows in Draven's house, and a couple more big baby blankets--done.

Back to School
I've been involved with a grad class this semester, offered by BGSU. There are 20 students in the class who hope to be special educators or school psychologists in the near future. And there are 10 of us parents who are 'embedded' in the program. The idea is to be sure these future educators really get what the difficulties are that we families face every day. I got to tell our story last week. The only way I could sort out what we've been through was to turn to my friend PowerPoint for help. DH and I worked and worked to try to remember which school the kids went to in what year. They've been shuffled and shucked around so much and for what? Going down this road again has been tough. And then we get a letter from the State Board of Ed, saying that our district has been selected for a review of the Special Ed program. We were invited to attended a meeting and if we wished, we could make remarks. Now, I give public programs for a living. Doesn't bother me to stand up in front of hundreds of people and talk. But I was shaking so hard when I gave my remarks that I must have sounded like a complete loser. But when my Mama Bear genes kicked in, I was completely overtaken by emotion. And so very sadly, many, many of the same grievances we had 15 years ago are still happening. Can't this school district learn anything from past lessons? So now I have to prepare written remarks to submit, then it's time to re-convene the Parents of Students with Special Needs group that we started way back when. Back to the trenches for me, I guess.

Back to Work
And to end on an UP note, I got my request to re-up at Madison Junction! Hooray! I'll be happy to see my fingerprint cards get here, so we can get that out of the way.

Merry Christmas!

Christmas at our house is always, well, odd. We do the same things pretty much, but without my Mom and Dad to visit, it still seems odd. They've been gone 10 years now, but it seems like yesterday. We do miss them so much.

Yesterday, Christmas Day, we got to sleep in until 6 a.m.. A real record for us. For several years we were up at 4 a.m.. The pile of stuff under the tree gets smaller and costs more--a phenomenon known to all parents of teens. DD had a wish list that totaled over a thousand dollars, and FTD asked for one game. I really pushed FTD to come up with something else he wanted, but all he could ask for was the game. And it's Wii Music, which he said he wanted because the whole family can play it together. Way too sweet. (As a side bar, I went to the store to pick it up, and the price dropped $30! So then I really felt crappy for being so cheap with the kid.) We had already ordered DD's Lionel Legacy Remote system, even though he doesn't yet have a train that will run on it. But he got a couple of nearly Christmas Eve firewood sales and ended up with enough cash to order his dream engine: the Lionel Heritage Series Katy Legacy Engine. Sadly for him, it's back ordered so we have no idea when it will arrive. It will run with his new remote. He's thrilled and frustrated all at the same time, knowing the stuff is ready and oh so close. There's a train show tomorrow and he still has some cash in his pocket and is ready to blow it all. Sure beats some of the junk upon which he could spend money.

We did get FTD a Garmin Nuvi thingie. He's a map geek, and even though he will probably never drive, he's still our Chief Navigator. He's been able to read maps even when he couldn't read a book or tell someone his own address. One of those quirky autism things. Last night he set up the Garmin, currently named Greta Pam, to guide us to the Monroe Duvendack's for Christmas dinner with family. And unbeknownst to us, he set it to get us back home safely. We actually had fun trying to trick it, but it recalculated and by jove we mad it safe home. And while the thing belongs to FTD, DH and I will use it.

One of the lessons that we learned years ago about having kids with special needs is that we should try to engage them in real-age appropriate activities, even though their mental/spiritual ages are much younger. We've succeed so far with DD--he can be a geek at any age about Nascar and trains. The adults involved with both of those activities get a kick out of him, and really try to include him. We haven't been so lucky with FTD. Yes, his Scouting activities are great, but when he's home by himself, he doesn't turn to say, BSA online games, he goes to pokemon and you-gi-oh. I would argue that these are not age-appropriate, although I'm finding out that several of his typically developing buddies still play them. The difference is that they are dating and driving cars and visiting colleges, while he isn't. I'm still hoping that he can find something else in his life about which he can be a geek and still a socially accepted geek. We tried baseball and nearly succeed, when one adult at his school sent out a seriously negative vibe, and in one sentence turned FTD off from baseball geekdom. (BYW, I still think the teacher who told him "no" should have to come over and play pokemon to make it up to FTD. Jerk.)

The good news is that FTD seems to be very content with his games and videos. He's still kind and compassionate, just quieter than ever. On one hand he seems to be withdrawing more and more, but in reality it might just be that his friends and brother are becoming more and more outgoing. I hope at least.

Tom and I "exchanged gifts" at the hardware store one day last week. That's a fun story and I'll include pics for that one.

I hope you and yours have a pleasant holiday--as a liberal, progressive Christian, I wish you the peace that comes from the spiritual realm. "For unto us a Child is born." What joyous words indeed.

Autism and Alzheimer

A friend of mine wrote in his blog about how hard it is to visit with his Dad, who has Alzheimer's. (Birding with Kenn and Kim: Giving Thanks) . I have long, long maintained that when we find a cure for Autism, we will find a cure for Alzheimer's. Conversely, when we find a cure for Alzheimer's, we'll find a cure for Autism.

Living with folks with either sounds a lot alike. They forget who you are. They forget where they are. They say inappropriate things that they don't mean. They forget to eat. They eat too much. They sleep too much. They don't sleep enough. You know they want to express themselves because you can see it in their eyes. You can't tell what they want because they don't look at you anymore. They have receded into their own world and didn't take you with them. You rejoice for those tiny moments of cognizance--they are few and far between. It's hard to be with them. You grieve every day. Every single day.

So all you researchers out there: get cracking. Cure one or the other, I don't care which, but do it soon.

Rituals and Rites of Passage

It's been a day of both for me--working on the rituals associated with my niece's upcoming wedding celebration, then watching as my son's childhood friends climb in the car together to drive themselves home.

My sons will never drive--at least 'not never' in the near future. FTD, the older, has utterly no interest in even trying. I keep trying to convince him that he should at least have a clue how it's done. We have plenty of big empty parking lots around, but nope, he just doesn't want to try it. If I push him hard enough I can get him to go out and start the car for me. DD, the younger, would drive in a heart beat if we let him. But his impulsiveness is just so over the top that car keys and DD simply aren't a good mix. He's super careful on the tractor, and when he uses the driving mower he hoots and hollers like he's the Dukes of Hazard--very funny. I don't think he knows we can hear him.

But my sons getting those car keys is one of the rites of passage they will miss. And so will we.


My niece's situation is tenuous at best. The wedding celebration is scheduled for Saturday. Her beau is still in Texas and literally might not make it back up here. This has been the story of their lives--individually and collectively. The only thing the Elder Aunties of this tribe can do is be there when she finally makes decisions--the good ones and the bad ones. She so wants the princess wedding of which little girls dream, but decisions made many years ago come in to play now.

I'm one of those old fashioned girls who believes in the power and dignity of ritual. There's a comfort in ritual, including that nod to those who came before us and a thank you to those who love and support us now. Lots of folks poo-poo the ritual. They were often either "subjected" to it ad nausuem, or never exposed to any at all. Unless one has been through the ritual, it's hard to explain why one often feels "changed" after wards. I remember not a thing from the day of my wedding, but knowing that my friends and family were there for me through the process and on that day is sometimes the only thing that keeps me going. Bat Mitzvahs, confirmations, Cinco de Mayos, cotillions, graduations, ordinations, Courts of Honor, baptisms, first day of kindergarten pictures, weddings, funerals, handing over the car keys for the first time--all important rituals. All important rites of passage.

I grieve for my sons--knowing that they will miss many of the rituals of life. It makes it so much more poignant to me that those who are able to partake of the rites appreciate that they have these opportunities. Don't waste them, dear friends, don't waste them.

Random Thoughts, October Style, au deaux

I didn't get to my Nevada Barr book yet. I just know I won't put it down once I start, so I'm waiting for that perfect moment to curl up in my Big, Comfy Chair and read for hours.

The autism book addresses issues for younger children. And yes, we've done everything suggested. And the kids still have autism. Oh, yeah, they always will, damn. Now I need an encouraging book about young adults with autism.

Speaking of which, DD went to the Homecoming dance last night. He took his friend Allie, who has Down Syndrome. They've been buddies since they were 3 years old. It was a nice chance for them to do the other stuff that HS kids do. Fortunately, since I drove, they didn't go parking after wards. And boy oh boy, were the girls dressed up! Holy cow! My mom had a hard time getting us to dress up as teens, because it was going out of style--now it's back big time! Sheesh!

And a special shout out to Ranger Pi, who is now a travel writer in Quito, Ecuador. It's a dang shame that NPS lost this guy--we need more Ranger Pi's!!!!! Since Pi's a writer, his blog promises to be wonderful. Here 'tis: http://what-the-que.blogspot.com/ Adios!

Random Thoughts, October Style

Being back in Ohio means my mind simply isn't engaged enough. When I'm working out west, I barely have time for an original thought, much less totally useless thoughts. So here's this month's quick thoughts--though not the totally useless ones. I'll post those later.

1. Congrats to Raptor Ranger Lora of Acadia! She's pulled a perm job with FWS in CA, doing bird things! She's a great ranger and NPS will miss her! Another case of another agency getting really good staff from us.

2. Meringue is fun to make. But I should have timed this batch for a day that didn't rain and rain and rain! The humidity really does make a difference.

3. Oak Openings is one of the most beautiful places in the world in Autumn. I'll try to get some pics posted, but they don't do justice to the scene. It's as if we become part of the colors somehow. Even today, with rain and gray, gray skies, the trees are breathtaking. This is what I miss when I'm out west. In YNP, we talk about the beautiful aspens turning yellow. That ain't nuthin' folks! And New Englanders boast about their neck of the woods. Nope, again, the show there doesn't even come close the the show here. Y'all come visit.

4. Why, you ask, am I making meringues? Well, if Shannon doesn't need/want them for her wedding reception, I'll use them for Turkey Day and Christmas celebrations. They freeze wonderfully. And homemade ones can't be beat (no pun intended). I made coffee liqueur and amaretto ones this time around.

5. I'm back to around 50% thinking about opening our home for the Whitehouse Library Christmas Tour. If we can find 2 more houses closer to town, that would be better. We have 4 beautiful homes already.

6. I actually finally bought a book about autism. This is an exercise in telling myself that I've been right all along in how I've managed our lives for the past 18 years. And as it is with any child, the next 40 years are the scary ones. . .

7. Also bought new Nevada Barr book. This one is her third book that doesn't have Ranger Anna Pigeon in it. The first one was a "Gothic frontier western lesbian romance." Not a huge audience for that, as she points out. The other was a non-fiction work about her budding interest in religion, a very nice journey. DH is gone right now, so I can stay up all night and read the new book. Should be pretty scary-- and tonight really is a dark and stormy night. . . .

Sons and New Technology

My older son, FTD, purchased a new laptop computer this afternoon with money he earned from his summer job. What a step in growth--sort of. His primary use for it is to watch pokemon shows and upload game cheats. Okay, so he's not going off to college to earn his way in the world. But he did use good consumer skills to pick this thing out. That's an achievement right there. I'll take this as one of life's bigger successes for him--even though right now he's sitting next to me watching an incredibly dumb and inane show called Dragonball.

The boys are re-registered for school. What a gigantic pain in the seat. After the gracious and thoughtful welcome we received at West Yellowstone, the beating we took at AW was ridiculous. We had to prove we actually live in the district--where we've owned a home and/or other property for 30 years. We were told we had to produce 2 utility bills to prove we live here. Not our IDs, not our pay stubs showing where our money is sent (including the one the school district sends to DH to work for them), not even the public online records showing what we own and how much we pay in SCHOOL TAXES, but 2 utility bills. I said (very loudly and adamantly, I must say) no way. What a load of crap. At West and in Medora I just had to say, I work here. "Okay, when can the kids start and how long can you stay with us?" was the reply. Upon reaching the HS today (after last week's scene at the Board Office--they won't forget me anytime soon--we had to go through the whole rigmarole to pick classes again. FTD actually perked up at one science class that is offered. When his special ed teacher came in, she threw every wet blanket she could think of at him. No wonder he pretty much hates school. I'm really surprised that he chose to go back to AW instead of the vocational HS. He'll go there next year.

And the final upshot regarding his schedule is that he'll exercise his Senior option which is to skip 2 class periods a day. He'll skip 1st and 2nd. Except for the fact that I'll have to drive him in every day, this will work better around here. DD will get up and go, and FTD can get up in his super-slo-mo fashion. DD will be getting on the bus at 6:35, and I'll leave home with FTD at 9. That will give me a reason to get up and moving, too.

Nobody ever said life would be easy, but it shouldn't be spent on inane things like we did for the past several days. And yep, this this boondoggle won't stop me from moving back west next summer. . . I hope.