Monday, October 31, 2011

Trip Update

We got to go visit son#2 at "camp" this Saturday. And a 2 hr pass to take him to
lunch after "therapy".
**As a side note for the reader, I will refer to our mandatory trips to Rose Rock from here on out as "therapy".**
So far I've not found anything that's helping us or Carson in these sessions
yet. Sure we get information on his week or weeks, but it's nothing they couldn't
convey over the phone. So I'm not sure this constitutes REAL therapy yet.
I personally, pictured these as sessions we would be learning techniques for how
to handle situations that arise in the care & changes of caring for son#2. Not so far.

This week's "therapy" was spent mostly discussing a big bite son#2 incurred on
his right forearm after we left LAST Friday evening. It seems his roomate got
angry & bit him. When I saw it, it was a large softball sized green faded bruise. Lolly mentioned it as black the day she saw it. Now, we know how quickly things can happen with kids. It goes by in front of your face in slow motion &
you just can't get there in time. But for us not to be informed about it until
TUESDAY, got the mother hen in me up & running.

Turns out he and the roommate are supposed to both have 1:1 ratio of staff. So there SHOULD have been SOMEONE there to see it.If I understand it correctly, one of the boys staff (or both?) went to dinner without telling anyone else. Which left the boys alone. And although they took him to the nurse right away, it wasn't really reported. So we didn't get a call until Tuesday night.
Lolly (as I'm gonna call her) the therapist, said that someone DID get written up & higher ups took care of addressing the situation so it won't happen again.

Son#2's stuffy nose is a tad better but it's sad that they aren't listening to me on antihistamines interacting with his regular meds and making him angry. Like Hulk angry. So angry in fact, that he ran his head at the window Thursday night. He had a green goose egg when we saw him Saturday. *sigh!*
I've told the nurse in person when we checked him in & went through everything about meds & behavior with her. She even took notes. Then when we were there last Friday I told the same nurse in person again. She even made grunts that she understood. Yet she called me Thursday night while we were at the pumpkin patch and wondered why son#2 would be so aggressive out of the blue.
I'm beginning to think she's a visual learner that may need the PECS (picture exchange system) to get the message.
My sister-in-law told me we ought to make her a shirt that has instructions on it but with that being considered laundry, they'd probably just loose it.

Oh, on that issue of him not wearing his clothes & them not finding them, they were able to find them all after I sent an email asking how I was supposed to trust them with the care of my offspring if they couldn't even keep track of his clothes. Will wonders never cease!

We took son#2 to IHOP for a nice lunch & then to Wal-Mart to get a couple more long-sleeved shirts. He was a tad hyper and kept taking his shoes off. He even tried to run off in the parking lot & store.
The interesting part was when we go to take him on pass we have to strip him down for the nurse to write any bruises & marks down so they can tell what happens on who's shift of caring for him. And then when we return it's the same scenario but in addition to filing out paperwork about what we did & his behavior during the outing.
I told Hubbo this felt like jail. He joked when we brought him back that it was time to go get patted down to see if he had a shiv. (With his roommate the biter he may just need it! lol)

After two weekends back to back down there, we're looking forward to time at home this coming weekend & not being in the car as much.

**Thanks to the Updike family for watching sons#1 & 3 for us Saturday. And for waking yourselves at the butt crack of dawn to do it happily.**

Tuesday, October 25, 2011

Ten Things Tuesday

The visit & therapy with Carson went okay Friday evening. And we did enjoy our anniversary plans, but boy are we exhausted. Mentally & physically.
Some things about the visit & this past few days haven't been so great...usually I'm an upbeat person but today is about some dissatisfaction so please bear with me.
And since there is no Congressional committee (shocking since there's one for every other occasion) that cares about my grievances, you lucky few get to hear my complaints.

Ten Things I'm Currently Displeased About:

1. Son#2 was wearing someone else's pants when we got to visit him Friday night. A tad shocking considering there's only one kid as big as him.

2. Therapist was just as I had pictured her matching her voice. Young, unmarried, no kids & rather naive. I don't need Nancy Nice, I need Greta Go-Getter. And she tried to tell us son#2 only had two pairs of shorts! What?! When we checked him in, he had 7+ pairs. And every piece of clothing had a big white laundry tag ironed in with his first & last name on it. *sigh!*

3. We dropped off more pants, a hoodie and two hats I knitted for him---by Saturday night they couldn't find them. Or the bag they came in that I did not intend to leave.

4. Son#2 had the worst stuffed up nose I've ever heard when we were there Friday night. He even had some weird tic sniffing thing he was doing we've never seen. And with a deviated septum already, we're afraid that this summer's headbutting spree could have complicated that situation. It was sad at how little air he was getting. At one point we were afraid he would pass out. Seriously.
Give him a decongestant you say? I wish. They react with the meds he takes & make him angry.
He does seem to be better but it was bad there for awhile. He was so pitiful.

5. We aren't getting much information. Unless LaToya is there, we don't talk to anyone. They just leave the phone on speaker for son#2 to listen to us. Last night he was giggly which was nice but no one to ask what he had for dinner or how his day was. Boo!
It's like the left hand doesn't talk to the right hand. I'm not sure they are even attached to the same body at this point.

6. I got a call this afternoon from the nurse that son#2 had a big bruise on his right forearm. It apparently happened right after we left Friday night. His roomate got angry & bit him. No idea why. And no one caught it till yesterday--weekend staff--but they were too busy yesterday to call me & inform me about it.

7. The weekend staff that we met, although older than me, seems to be like having teenagers babysit. They don't want to get in trouble or do anything helpful, they just want to get their paycheck and go home. At least this is how "Upset Mommy" is viewing things today through angry eyes.

8. The therapist informed us Friday that we need one more in person meeting before the end of this month. That just leaves THIS weekend. Back to back is pretty hard. But since it was her boo-boo, she decided to offer to come in Saturday morning and let us do therapy then so Hubbo doesn't miss any work.
Then we *do* get our first pass with son#2 and get to take him to lunch for a couple of hours. THAT is going to be the highlight of my week!!

9. Okay, okay...I got all the negative out & I'm not a gonna leave on a sad note. I'm just not wired that way.
I'm SUPER thankful my awesome Moms could come & stay with the kids this whole weekend. She had fun but had to endure A LOT of games, puzzles & books with son#3. I think she was very glad to get home but enjoyed her time with us.
And I know both the kids did.

And a funny son#1 story...
10. When we took my Moms to lunch after church Sunday, we chose an authentic Mexican restaurant. We had to stop and get son#1 some fries from Carl's Jr. to take with him to eat. You can totally tell we didn't/don't get out often because this was his observation--thankfully whispered(albeit loudly) to me.
After seeing the waiters take our drink & food orders, he leans over to me & says, "Why is that guy acting Mexican?"

Tuesday, October 18, 2011

Happy Anniversary!

Today is our 14th wedding anniversary!! We have beaten some serious odds. The divorce rate for parents of Autistic children is 85%!!
No marriage is perfect because none of us have that privileged title individually. We're flawed humans just trying to make it work together. To me it feels good to have someone by your side, helping you fight, love & laugh through the hills & valleys. So good that sometimes you wanna strangle them in their sleep. (Did I say that out loud?)


Life is never easy for any one person and when you combine two people the baggage can sometimes overwhelm the union. For us it's all about having God guiding your decisions, family and friends to fall back on when you're not able to hold yourselves up, and being able to be yourself.
I don't have some secret key to making marriage work, I don't have really good advice other than be yourself. Be genuine and like yourself. Don't loose yourself. I think of it as we had security & confidence in ourselves when we were young & met, so if we keep that going, it's most likely attractive to the other person wouldn't you say? You give your husband time...you give your kids time & attention...why wouldn't God want you to give yourself that?

Anyway, we get to truly go out & celebrate our anniversary for the first time in double digit years. This Friday we leave for the City to go do family therapy with son#2 and then spend the night somewhere. To me it doesn't matter where as long as there's no dogs in my bed and no kids waking me up.
Dinner out & tickets to a local playhouse will round out the weekend Saturday. I can't tell you how excited we are to just be alone together for more than an hour!! It's the little things I'm tellin ya! Enjoy them & everything else is gravy.

Wednesday, October 12, 2011

Ten Things Tuesday

What? I can pretend. Shut up.

Ten Things I'm Thankful For Since We Have A Little Less Autism in the House:

10. I can leave everything unlocked!!!!!! Food,the fridge,cabinets,trash,cleaning products--the list is endless!!!!

9. We can eat when we're hungry & not on a scheduled plan. Not to mention the bonus of getting to leave dishes out or on the stove if I want & no one will play in it.

8. We can eat OUT as a family!!

7. My water bill is considerably lower & there's A LOT less laundry-towels/sheets. I need new towels though--after so much washing they look like someone tried to gnaw their way out of 'em.

6. I can have decorations out around the house & candles lit--for the first time EVER!

5. I have time to myself in my own house!! My thoughts get finished (most of the time) and I don't feel like a Tasmanian devil.

4. One less school to keep up with. Papers, meetings, special days & occasions, backpacks & snacks.

3.I can soap out in my bathroom & kitchen without the fear of someone eating it.

2.I can have my front door open to watch for the bus in the mornings & afternoons or just to watch for the mail.

1. And the number one reason I am thankful to have a little less Autism in my house is--Hiney wiping. It has been almost a month since I've wiped someone else's hiney. It makes me wanna cry.

Sunday, October 09, 2011

Visiting Hours Are Over





We got to go up to the City & see son#2 last night!! I was like a kid waiting for Santa. The brothers were excited but they were at opposite ends of the spectrum on it. #3 was excited to see his brother & play with his toys. #1 was NOT excited about having to travel & leave the house (a.k.a computer) at all. I packed stuff for the kids since 2 hrs in the car each way is very new to them. Charged all our electronic devices & the portable dvd player and through in their favorite movies. I got some snacks, to go visit we leave so early, yet it falls right in the middle of dinnertime & to wait until after visitation is too late for the kids. And me.
Son#3 and I also worked on making cards for #2
to hang up on his wall of family pictures & such.


We need rain here so badly, and about half way there it started pouring. And it didn't stop until about the same point on the way home. Dry as a bone here at the house. Go figure.

We met son#2 in the cafeteria--we got there right at 6pm when visitation starts. We waited awhile because he was finishing up a shower after dinner.
But as soon as I saw him outside, I ran to him & the first thing he did was kiss me right on the mouth!!! My baby missed me!!!!!
He smiled and we went in to see everyone, who was already staring out the window because I'd been squealing like a school girl.

He was a little confused meeting in the cafeteria. Their days are so scheduled, he knew he'd already been there, eaten dinner & was supposed to be in his room. So like the son we know and love, he started his hunt for food.
But once he settled down & started chasing his little brother around & ignoring son#1, he was fine. He watched one of his favorite videos with son#3 and I could tell he had missed his Sesame Street peeps. He stared at that screen forever. I couldn't stop touching him. Hugging & leaning, loving & just snuggling him.

Son#2's personal assistant--"PA" (24/7 staff person that rotates out in shifts/days) is the same girl we met the first day-LaToya. So it was nice we could chat with her again & really get an idea of what's been going on. We've had phone calls of bruises & scratches--some explained, some not. As a mom, that's difficult being so far away. He's a boy,I get that bruises & scratches will happen--especially with this kid. But getting a call that your kid has a bruise on his cheek and you're so far away & no one can tell you HOW it happened...sucks rotten eggs. You feel helpless & a tiny bit like you failed because you didn't keep him safe. I'm still trying to understand with a personal assistant with you 24/7, how you have an unexplainable bruise. But when I saw him, saw it was all okay, he looked great, I could move on. The nightly phone calls are nice--when they remember.But, nothing beats seeing him in person!!

Leaving wasn't as difficult as I thought it'd be. For me or him. He was ready for meds & bed and I was just content to see him & know he's okay. There's something heart warming about knowing that he had fish nuggets, green beans,and macaroni & cheese for dinner and that he might get to go to the park today. Son#3 was the crier. He bawled & bawled that he didn't want to leave his brother. And he didn't get to go to see his room & play with his toys. It was cute.
It was a little bit of a stressful drive home with all the rain and the kids being tired & cranky in the backseat. However, to this mama, it was ALLLLLLLLLLLLL worth it. Totally.

Thursday, October 06, 2011

Seasons Change

Hello again.
So much has changed since my last blog that I hardly know where to start.
After a very long & challenging summer with son#2, we were able to have prayers answered recently for his care.
He has struggled with some manic issues this summer and after trying FIVE different medicines, we ended up pretty bad violent outbursts for the whole month of August. It took the bad med two weeks to leave his system, but once we found the med that was "just right", it was smooth sailing.
However, it became glaringly obvious that son#2 needed some help with new habits. And his medicines dealt with in a controlled environment where we weren't left with six holes in the walls to repair & he didn't end up with two big black eyes. It was much more than we were sadly able to provide him with.

After much frustration at turning to people with supposed expert advise & resources, we met a brick wall. (When the local Autism Resource Center doesn't know where to point you, someone's not doing their job (RESOURCE center?)OR we have a truly unique individual that God has entrusted us with.
We believe God opens doors. And ours came in the form of a place ironically called Camelot.

At Camelot they didn't blink when I mentioned son#2's meds, his violent outbursts, his non-toileting issues, naked time or sensory affinity for poo. That's right, I said it. If that rankles your tail feathers you might as well stop reading now.
Camelot welcomed us, knew what to do with son#2, and had a plan of attack on all the above mentioned issues & more. Camelot even had an opening September 8th. That could only be God people!!!

So many questions. Camelot is a live in, residential treatment facility & so son#2 will have to live there 24/7 for anywhere from a few months, to a year or more.
I don't know that I could have been more scared & relieved all at the same time.
We went for an interview and then they got to know about son#2 and his issues.
They finally approved him and to boot, he gets one on one staff. That means wherever he goes he has one person that is his personal staff attendant.
Which it IS a full-time job keeping son#2's hands out of his pants. I'm sure he's not the only male with that problem...

I didn't have warm fuzzies about the place, but after checking around they seem to know their stuff & to be honest, the next closest place that takes non-verbal Autistic kids is Kansas.
Two hours to Oklahoma City doesn't look too bad.
Checking in took hours & hours. And we even had to inventory his stuff & put his name on all his clothes. Sounds like checking your parent into a nursing home doesn't it? You know they need the service & care they can provide. You know you've done all you can do, but still, to leave them there in someone else's care...
it's the hardest thing you've ever done. It is for me.

Son#2 is easily adjusting. He does love the Build-A-Bear bunny we got & recorded my voice on. He's sleeping with it & loves to push the mommy button over & over. His brothers helped "build" it. When it came to making a special wish for son#2, and kissing the heart, I found it so endearing son#1 was over to the side really talking to the little red heart. I hugged him & asked what he wished for his brother.
"To never come home so I can have my own room." *sigh!* That's a teenager for ya!
The brothers know he's away for a long time. To not let them think he was being sent away for bad behavior, we told them it was camp. And so they wouldn't want to go themselves, we said it was to learn potty training & how to keep his clothes on. The first day after he was gone, son#3 asked me as soon as he got off the bus, "Did you go get him yet?"

His workers & staff are literally arguing over who gets to be his one on one.
That's comforting. I pray daily no one abuses him, hurts him or looses their patience. That they keep him safe & healthy. And that he shows him on smart he is & learns some new habits.
He's taking lots of walks and keeps a tight schedule. The good news is they call almost every night. We get to be on speaker phone & hear him laugh and he looks intently at the phone when we talk. And sometimes hangs up on us or puts us on hold.

It's quite an adjustment. There's relief of the tension with which we're used to carrying in ourselves and there's also grief for me. Hubbo has a better time with the big picture. While MY head knows that & I'm a smart girl, my heart feels much differently about the situation.
I'm amazed by the workmanship God created in the human form! We can feel so many emotions that usually cancel one another out, yet all at the same time---andd my heart doesn't explode. At least not yet. Check back in with me next week.

In the meantime, if you pray, please say a little prayer for son#2 when you think of us. This is a challenge & while it is going to be a good thing for him & our family, they WILL be asking things of him he won't want to do---otherwise we would be doing them here.