State Capitols For 500 Alex

Let me just say, today started out a little unusually as I took stuff to the car to load it & when I turned around there was a pit bull heading from the garage into my house.

I hear one of the poodles going CRAZY. (yes poodle)

I start inside and end up following a guy into my own house who owns the dog. That dog was scared to DEATH of my poodle. Just wanted to play. The guy lifts it up by the collar & carried it out apologizing. I stood there stunned.

After I finally left the neighborhood it started sleeting I kid you not.

I'm so glad these were not signs of how my day would go.

But wait! There's more!

I drive halfway to Oklahoma City, and get a phone call from Rose Rock saying, they are sorry but Carson's therapist is sick & the therapy appointment  is cancelled. I tell them, umm no. I am almost there---I can at least bring Carson his robe/flannel pajama pants & see him--right???

They hesitated but said they were pretty sure I could. They'd check on it.

I kept driving. No one is keeping me from seeing my kid. Not gonna happen.

 

 I pulled in & didn't even buzz the intercom, I pushed in the gate code & drove through.

Came to the front desk, the guy says, "Didn't they tell you--his therapist is out sick.  Your appointment is cancelled."

I said, "Didn't they tell you, I was already over halfway here. A two hour trip. I'm here to see my son. Please."

(Cue the big sweet smile with dimples.)

He gets on the phone & calls someone. Gets back to me telling me to have a seat, he was gonna see about getting me an escort.

I'm sorry---a what now?

An escort.

For....

To stay with you & Carson.

Uh huh.

Okay. Get 'em.

I wait--Carson shows up, filthy. Again. Hair not combed, face not washed, nails not trimmed & I won't mention the filth that in underneath them. And just like Thanksgiving, pants that will not stay on his body.

I am hardly impressed. We walk to a room, I take some pictures--which I was surprised I was allowed. Then over to the cafeteria where Carson sat in a corner facing a wall, by himself. (he tends to steal food off other trays)

Other kids & workers come in. I was shocked by what little food was on his tray & his little Styrofoam coffee cup sized fruit punch with film on the top. Other kids not eating, so staff takes their food & gives it to other kids.

I was surprised by how disinterested he was in it at first. They never washed his hands & they let him EAT with his hands.

I kept it alllllllll together. Took pictures on the sly--never of other children--even though my mommy heart wanted to. They never even cleaned up his ketchup face or hands afterwards. I would have, but there were not even papertowels around. Much less a sink. I left soon after.

 

My meeting at 2pm at the Capitol was because recently, I was asked by a fellow autism mom we'll call Betty, that I had never met  to attend a meeting at our state Capitol to discuss the facility Carson currently lives in.

Today that meeting  included Rep. Newell, Rep Moore & Rep Jordan. As well as maybe 10 different Dept of Human Services workers from different agencies.

We had Office of Client Advocacy, Child Care Services & Child Welfare Services all represented. Apparently the invitation was extended to DDSD, Rose Rock and Oklahoma Health Care Authority & they chose not to respond or send anyone. I'm shocked I tell you, shocked. (insert sarcasm)

Another mother we'll call Wilma who's son has recently turned 18 yrs old, has trail blazed for Carson & then myself.

There were maybe around 15-16 of us total.

 

Betty had called this meeting with Rep. Moore when she had met with him previously in September.

Betty says her son was in Rose Rock 9 days & later told a therapist that he had been molested while there.

Wilma said her son had unexplained bruising while there, just like Carson had. Neither of these women has a child there now--but I do. Betty kept saying she took her son out of Rose Rock & we left ours in.

Not winning you any points with me Betty. Your son doesn't beat you up at home daily thank you very much.

Betty has proven herself to be a little of a loose canon when talking to me previously so I knew going into this meeting, she would have her own agenda & be someone I will sit back & watch. Wilma has always been very sweet & helpful to me but seemed like she was carrying a probably warranted, chip on her shoulder from having to blaze the special needs petition trail.

Wilma also brought Fred her significant other & attorney.

 

Betty immediately let it be known she was hosting this party & even went so far as to sit herself at the opposite end of the table from ALL of us. She wouldn't even sit next to me, but several chairs down. So when she spoke, we ALLLLLLLLLLL had to turn & look at her. I refused. Immature you say? Petty maybe?

I never give into a 2 yr olds tantrums and give them the attention they seek. I usually the leave the room & tell them to come find me when their done with the drama. Since I couldn't leave the room I looked away.

The House Rep's asked us to go around & introduce ourselves so they knew where everyone was coming from perspective wise.

When it came to Betty's turn, she went off on a tangent for 15 mins until one of them reigned her back in, reminding here they didn't even know the rest of our names yet.

 

Betty continued to hijack what anyone else said & continual say her son wasn't like the other children because he could talk. I quietly pointed out Wilma's son had some words too.

I also mentioned my son was the only one who couldn't speak, wore diapers & was the only one currently living at the facility in question. Point Swaim. Back on course/task.

 

Needless to say Betty sort of sunk her own battleship from my point of view because she kept getting all coo-koo for Cocoa Puffs, getting off point & talking crazy.

I am sorry but you cannot accuse the women sitting across from you that work for the Department of Human Services, of being personally responsible for the bad choices or decisions other workers have made.

This will get you nowhere with them & that helps your son how?????  Exactly.

You HAVE to keep your big picture in mind & follow the train. The train of thought YOU called this meeting about.

Thank you for playing, we have some nice parting gifts for you.

 

Wilma, was doing fine until it came to funding & Texas. Then she sort of started bouncing in her seat. She got loud---being that'd it been 20 minutes until Betty last spoke, she piped up that Wilma needed to use the microphone so Betty could hear her down at her end of the table.

MAYBE, you should have thought about that BEFORE you sat down there on your throne by yourself lady!

But I digress.

Wilma, continues on about the past & her son's years spent in Texas, the numbers of financing it all, how many kids are in the state of Oklahoma total, and how Oklahoma needs this & that for future kids coming behind ours. All true. But...derailing the train Wilma.

 

In the mean time, at certain strategic times I am sliding over pictures of Carson's bruises. It comes up about me wanting to send Carson to Texas. Rep Newell asks me why I want him to go there. I keep it simple--Oklahoma can't meet his needs in the ONE facility it has. And as much as I'd like to tell you Rose Rock is meeting his physical needs I can't even do that. We are talking about maybe 1% of the kids on the autism spectrum in the state of Oklahoma. Maybe under 10 kids in the entire state like Carson. They are not equipped for these kids. Texas touches Oklahoma, so I can easily see my son location wise. It is the biggest state in the union which means more money for mental health, which translates to more array of facilities available. Not to mention more kids like Carson & staff who've treated them, encountered them & worked with them. I am not expecting a cure, I am expecting life skills. Help with communication & potty training. This is not too much to ask for the longevity of my child's happiness.

 

We discussed Dr. Prune (my pet name--remember him from the conference call?) and there were eye rolls from the DHS agencies, and nods of heads in agreement at his biased unprofessionalism. And his lack of compassion when dealing with say, anyone with a  lower IQ than average. We all agreed & let the House Rep's know that Dr Prune holds several major playing cards when dealing with these kids & their care. Especially concerning where they can or not go.

 

By the end of our several hours together I think we all came to be on the same page that although Rose Rock is all that Oklahoma has for kids like Carson---there is no reason to allow it go on unchecked.

I let them know point blank that although it is a private facility, we all know about the politics of this game.

Rose Rock can say they want Carson gone & set a discharge date at any given time.

Oklahoma Health Care Authority can say--we can't stop you from discharging Carson---however,  if you do, we will pull alllllllll these other state funded kids we PAY YOU to keep. So--it's your choice Rose Rock.

It's easier & cheaper for Rose Rock to keep Carson until he's18 years old. This is the game & let's not go on pretending it's not how it's worked & will continue to do so unless we keep it in check somehow, by working together. Checks & balances people.

 

I'm pleased with everything I was able to make heard for Carson today. I let them know I in no way want Rose Rock to close---I want it restructured & held accountable for it's care & actions towards every single child there.

I let them see a small peek into what living in our world is like, and how we know what is best for our kids--not Dr. Prune.

My feelings on Texas & the level of intellectual stimulation I expect for my son is my priority. That I will be making a trip to Texas very soon to bring as much information to court in January as I can.

I left them with the knowledge that while I am not pleased with some of the things that have happened on this journey, I see hope, and serious people in this room who want things to change. And that I look forward to hopefully being a part of that.

 

I was approached after the meeting by a couple of the House Rep's who gave me their cards--one who's parents fostered kids in wheelchairs, diapers, etc. He said he admired my resolve & wanted to continue this another time with me. I told him I was sure I would be around.

Several of the DHS agencies approached me giving me their info---taking mine.

One asked me what I used to do in the line of jobs. I told her I worked at a place just like Rose Rock after college in Little Rock. She wanted me to know I'd make a great child advocate if I wanted a job after I get Carson settled. I just might do that lady, I just might do that...

If there's one thing I've learned over the years, you have to keep yourself together. I did that today & with that came their respect I think. Rose Rock will be looked into, the investigations into the abuse won't be let go any longer & some new people are looking to help Carson & hold others accountable.

Everyone was heard today--they all had their agendas and they were heard. You can't get much better than that.

Holidays

There are quite a few holidays throughout the year, and so many memories I have from past holidays with my boys. The memories are a mixed bag of good and some bad. Today is Thanksgiving & we've had a very good day by comparison.
This morning, I didn't get up at 4am with son#2, but I did have to pack a special lunch to take with us for son#1. Today the husband didn't have to stand outside & feed son#2 from plates that I bring in succession for them both. But I did miss the appreciation that son#2 would have had for all the terrific food we had. And how he would have "helped" me in the kitchen last night, never leaving my side while I baked.

After eating lunch today, our family got to stay & visit with family instead of immediately rushing off after meeting the threshold of sensory overload for the boys.
I remember two years ago, our after lunch plan was to take a walk. I stayed home to clean up the dishes. The husband took son#2 and #3 for a walk around the neighborhood.
I got a call in less than 10 minutes that things had gone down hill suddenly.
Son#2 was getting naked, and when the husband tried to stop him, son#2 started screaming & scratching him.
I got in the car & started driving in the direction they had taken off, looking down side streets, with no idea where I was going.
They were 2 blocks away as I barely came to a screeching halt & threw the car in park while I jumped out.
We together were able to push son#2 into the backseat, yelled at son#3 to get in the front with us, locked the doors & I took off as fast as I could.

Two blocks doesn't sound like very far to drive. Shouldn't take too long. Yet, I remember it feeling like 30 minutes was going by. Son#2 was livid by this stage and sitting behind me attacking me the entire way. Grabbing my neck, scratching my face and neck as I tried to drive without wrecking the car. Trying to keep my hands on the wheel, but defend myself. Trying to keep his hands from grabbing my eyes. Screaming. So much screaming for that short ride. Son#2 screaming, me trying not to scream so I don't scare son#3. Husband trying to hold son#2 back as much as possible, also being scratched up.
We get home & send son#3 into the house while we grab a blanket in the backseat to wrap naked son#2 in while we try to rush him into the house without all the neighbors seeing the drama.

Once inside the house son#2 really ramped up chasing us through the house & attacking us.
That, was how a typical holiday day was spent for us. The days would take so long to come to an end. Time passed incredibly slowly. Torture.
Memorial day, Fourth of July, Easter--take your pick.

Today I missed son#2. And  I felt guilt at enjoying my food in peace. I couldn't sit down too much. I'm not used to sitting through the holiday days. I felt out of sorts. My other two sons entertaining themselves, just being boys--being themselves. No rush, no hurry. No worry of having to defend myself. I think it was a little taste of normalcy. Maybe a bigger bite of it than I was quite ready for. But I tried to let myself enjoy as much of it as possible. At the end of the day, being back home in my nest, I tried to really let go of the guilt that I did enjoy a day made for family---while a piece of my family was missing. I tried to slowly let myself soak it in the realization that this may be part of the new normal in my life. That calm & enjoyment of the day that how many people take for granted?
NEVER in all my time as a mother, have I had a Thanksgiving where I have eaten, sat down somewhere comfy, and taken a nap. I still haven't. But it's something I might be okay with doing one day. 

Baby Mine

It was your birthday not too long ago baby. I won't say I haven't had time to write this, I've just been thinking on my words.  Now here we are at exactly one year since our lives changed so dramatically.

Sometimes it's hard for a mommy to find all the right ways to say how she feels inside. God made us complicated creatures that have so much love, that we can't always tell you exactly what that means.
As moms we have so many people's happiness that we seem responsible for. Sometimes that's a heavy feeling to carry in a mommy heart. Especially when we can't fix everything for you or at the very least, make it better or easier for you. What do I tell you & your brothers every day before school? Make good choices. I want you all to choose things that will make you happy in the future, not just in the moment. Whether you're choosing friends, what classes to take or whether to stand & fight--I want those to be things you think about before you act. However brief it may be, it may save you from hurt in the long run.

I seem to make a lot of your decisions for you and it's difficult for me to always see the big picture.
I used to think I knew exactly where you'd be--with me. Forever.
I knew from the moment we knew we were going to be your parents, that you would be a boy. I just had this feeling of certainty. Funny enough, as you've grown into the teenager you are today, there have been a lot of moments of certainty I've had about you. Which is ironic since autism hardly ever contains certainty. But maybe that's why in the moments of floundering for answers for you, I have found myself truly scared. You came into this world on your own terms in such a hurry. You were born 30 minutes after we got to the hospital.  And since then, you've done almost everything, your way. You hardly let me baby you ever. So independent. Your own person.
You'd come snuggle but only when you wanted to & for only as long as you wanted.
 I was so worried the first time you stayed overnight from me. How would I let you know I'd be back? How would I let you know not to be scared? I remember just staring at you. Talking to you when you slept.  Trying to will you to understand this was for the best & not to be scared.

It's been quite a year. This time last year we celebrated your birthday in town. We saw you every week & we were about to embark on a scary journey together where giving up my child, would help you more than anything else could. Help us all. I still don't know if I understand it all, but we made it every step of this year together, by the grace of God.
You have taken the past 3 years and you've been so very brave baby. I know you've been scared, you've been sad and you've not understood all of what's been going on. But, through it all, your independence has helped you stay strong & endure. God has heard me beg many days & nights to hold you in His hand. Baby, you have so many people that pray for you, that wish good things for you & want what's best for you. I know we'll survive this stage of life. It's what we do. We're the toughest ones in the family. but don't tell your dad & brothers. We're the toughest because we have the softest hearts don't we? We feel things the deepest & yet we get back up and keep going forward.  You may be a daddy's boy, but we're a lot a like.

Baby, I don't know what is going to happen from here on out. I don't know if I can't make anything better for you anymore like I used to. But I know we'll just take it as it comes & survive.  It's just what we do.

What Were You Doing A Year Ago?

Do you even remember? I do. I was trying to address some valentines with Son#3 when Son#2 (who'd been home 5 months) was making all his noises very loudly. So we could hear, I thought I'd shut my door to give us some quiet--but Son#2 wasn't having any of that. He started trying to bust the door in. As I went to open it so he wouldn't break it, he busted in & a very large picture frame behind the door fell & glass went everywhere right by the door. I started pushing the door closed to keep Son#2 from walking in it & told Son#3 to get up on my bed until I could clean it up. Son#2 started busting the door hard with all his weight, so I left the room to draw him away from the door/glass & calm him. I started toward the kitchen & he took a swipe at my neck. I kept moving, hurrying, trying to get to the pantry & try to buy off his hunger with food. I never got to the pantry.


Son#2 chased me & chased me in circles around the kitchen table, around the living room---all the while I was trying to get my phone out & call Husband. I knew this was a bad episode & Son#2 was very wound up. He was SO angry that I'd dared to keep him from a room. Was he tired? Hungry? Constipated? It didn't matter. All that mattered was he wanted blood. He chased me &  every time he caught me he grabbed a hunk of flesh & twisted and held on for dear life.  When I could I tried to grab him behind the neck & push him down to the floor so he'd have to tire himself out to get back up & come after me, buying myself time. There was never enough time to pull my phone out AND call. I finally dialed 911-- and lost my phone, never getting to hit send. From the floor he grabbed my leg & took me down like a lion does his prey. He bit the calf of my leg and held his teeth in. I screamed & screamed, all the while trying to crawl away, kicking & screaming. When I got away I called Husband---another bite on the back of my bicep. More screaming, me pushing his face to make him let go of his bite/hold.

I won't go further. That's the jist of it--the whole 45 mins of it. The kids locked in separate rooms, hearing all the screaming & crying.  After Husband got home--and Son#2 calmed. I had blood everywhere, Son#2 had a black eye that was almost closed. So Feb 13, 2013 is the day. The day I knew it wasn't going to work with my baby living at home.

Now, here we are a year later. Son#2 is happier back in an an institutional type environment full time where he knows the boundaries & that he's outnumbered. We're going to court every few months, sharing custody with DHS & paying child support. There is a sense of relief, shared with a sense of loss. Every day. The sad part to me is we are all better off living apart. How is that part of the God's plan? I ask why, because there's no point. However, that is the hardest part to accept. But we have other children to raise that we are responsible for. And no one said life should or would be easy on this earth. One day at a time. And days like February 13th, are 30 minutes at a time.

Rock, Meet Hard Place

So many of you have kept up with our family's ups and downs on Facebook,and it's been easier to keep family AND friends updated at once. But I'd like to return to my blog & try writing more often.

As of today, October 14, 2013, Son#2 is still at Camelot (Rose Rock) where he's been since the first week in August.
We received a visit from DHS again in our home last Wednesday evening. They said they needed to meet a week before court. The new permanent case worker says the problems right now lie with OK Healthcare Authority & Rose Rock saying we aren't participating enough in son#2's therapy.

 We go to court next Tuesday but even if the judge recommends that we only have to go at the least, once a month to OKC, the OKHCAuthority, can still reject that. Even though they realize & understand that son#2's situation is one where it's permanent & not a rehab type situation.
They are son#2's insurance because he is disabled. When you are disabled, the state gives you their insurance. (which is good in our case because otherwise his meds would cost us around $2000 a month) So, since they are paying the bills, they have the final say in whether we are keeping involved enough in his treatment plan. They are trying to fit a square peg (that's us!) in a round hole.  And in my opinion, essentially forcing our hand.

The main problem with that is, it's impossible for us as a family to mentally, physically & financially to go every single week to OKC for "therapy". Been there & done that for a year. Still dealing with some costs from that. That my friends, puts us between a rock & a hard place. Meaning the state would try & discharge son#2 from where he's at--the rock. This is THE only place within the state that meets all his needs. To keep him there at Rose Rock/Camelot---we either go once a week, OR we sign over/give up parental rights--the hard place. To keep our son safe & in the only place in the state equipped for him, we may have to face the reality that we have to give up our rights so that he can stay there.

We've been grappling with this for awhile, knowing it was a real possibility. The guilt, the mixed feelings, our other children, the anger, the tears that are constantly at the surface ready to bubble over. Knowing something is easier physically on your family as a whole, in no one cancels out your emotions & feelings of your heart & what you WANT to do.
 There's so much we're already still working through with knowing we are settling into a routine without him here & that he won't be back here for the upcoming holidays. How do a mother & father sit down & logically talk out their feelings on giving up parental rights to their child when everything you did from the time you were pregnant, was to protect them & keep them safe?

We are trying to make arrangements to get down to OKC very, very soon so it buys son#2 some time at RRock & gets the insurance off our backs. Ideally, I'd go myself during the day once a month or so. But it's tricky. Nothing is ever as simple as just saying it. Car issues still in the picture for us & just timing. Also, fall break is this week. Anyway, all that to say of course we'd love your continued prayers for son#2 and his safety/happiness& contentment. But we also ask for some prayers for us, that God may give us wisdom to know what is right for our family. To help a mothers heart not break in two, no matter what the outcome.

The Next Step

Hello friends & family. It's been awhile since I've
given you an update on Carson's situation & plight to get him what
he needs. I will try to explain what's been going on, but bear with me. I've been putting this off
for a month or so. All this information has taken me months to collect & it's been in small bits & pieces around from different people. And to be honest, it's gut wrenching to even sit here & type it all out for you. We are in a very sensitive place right now sort of riddled with anxiety off & on as our minds fade in and out of distraction.
But it is easier to explain it one time & with a fluid train of thought. Also, if it seems I'm being vague--I am.
For reasons of protection that could come back on us. I'm trying to tread carefully since we are new to this situation & want to protect ourselves. Thank you for your patience as we've tried to explain blindly or politely changed the subject.

Tomorrow is D-day for us. Tomorrow, July 30th, 2013 is the day we are
supposed to pick Carson up. As in, he is supposed to come home.
Contrary to all that we hear,from people in positions to know or experts in this field, our research with actual people tells us that the special needs petition isn't really a form to fill out or a waiting list
to be listed on. It's us the parent, petitioning the court to place Carson in a facility on a full-time basis. To do this, we refuse to pick him up tomorrow.
The fact that we will refuse to pick him up, begins the process. The person we are in contact with, tells us this is the only way. Which is such a shame.
As much as I hate to say this, it will technically be us, abandoning Carson by our refusal to come get him.
The word hurts me so if you've used it around me lately & I've flinched, you can understand why.
I'll try to explain a little of why it has to be done this way.

In Oklahoma in 1964, Hissom Memorial Center was donated in Sand Springs for a home/institution for those with mental disabilities. They housed over 1200 patients. In the 80's a group called Homeward Bound brought a suit against the center in hopes of closing it down and placing patients into communities and integrating them into society as much as possible, contending it was more humane and much cheaper than institutionalization. Hissom closed in 1987. As in any establishment, I concede there were probably many issues that were wrong with Hissom & at the same time, many people/children that it helped benefit.
After it's closing, legislation was passed to prevent any child in Oklahoma from being permanently institutionalized. What this means for Carson is that until he's 18 yrs old, he would have to go to places like Rose Rock, and be there MAYBE a year, then checked out for 6 months & re-admitted when there was space. All the while, with the staff knowing, he isn't "cured" of his aggressive behavior & that most kids like Carson are just starting as they enter puberty.

What happens with the special needs petition is, we will call Shadow Mtn tomorrow morning---and by we I mean Matt--to let them know we will NOT be picking him up. Then they may possibly send a letter threatening us to pick him up or they'll call the police. We would then send THEM a letter detailing why we don't feel it's safe for our other children to pick Carson up & return him home. However long it takes DHS to become involved, they will be contacted & whenever they get to it, Carson will be moved to a new facility they've built in Tulsa for kids that are wards of the state. We've heard it's nice & he will be taken care of. Then we will go to court (hopefully avoiding arrest--God is good.) and explain why we can no longer have Carson at home for his safety or ours. They assign us to a DHS person & meanwhile Carson is in DHS custody, along with having a guardian ad litem--whom we already know God has chosen. Sources say, we do not need a lawyer for this, it's pretty informal, but you obviously CAN have one if you wish. We called one lawyer but he claimed to have invented the special needs petition & wanted a $2500 retainer to tell us anything. We'll be going this alone. As scary as it all is, our story has made it's way around Tulsa. We choose to trust & believe God has this one.

After a few more court dates, Carson will most likely return to Rose Rock in OKCity. And we will still retain visitation but will NOT have to attend weekly therapy sessions etc. Our rights as parents are still there but the burden of  We will then EVERY 30 DAYS, return to court, to have his papers stamped with "discharged" and then we will be asked if anything has changed on our part--we say no. Then his papers are immediately re-stamped with "re-admitted". This is how the state gets around it's own law it's too lazy to change, which keeps Carson from remaining "permanently" in an institution. This will continue until he's 18 yrs old,  we find a place in another state perhaps, or until I pester enough state officials to move money around & place him out of state.

As you can see Carson still needs prayers, we are more at peace but it's nerve wracking. The past months doing Tuesday therapies and playing this game with the therapist is more than I can get into right now but needless to say it was draining. Her asking if we're ready for him to come home & if we have all our papers for the special needs petition filled out. All the while she knows what that entails & so do we. It's like a dance that I am NOT good at. Fakeness & lying are two things I really despise. Anyway, please continue the encouragement & prayers for our entire family while we go through this difficult time.




 

My Three Sons

Dear Boys~

One day you'll be reading this as grown men, and I felt I should let you in on the reality of how a day in the life of your mother feels.
Today, in this time of your life, you think I play games and watch T.V. all day. As much as I'd like this to be true, a lady of leisure I'm not.
I just had a very trying few days lately as your mother and felt it might help your future selves and your children to understand me better if I write it all down now.

Jackson, I really worry about your adjusting to high school. You still seem so immature to me, yet your deep voice & leg hair suggest different. I know, you don't want to talk about that.
You tell me you want to live with me forever & won't even contemplate spending the night with someone else, but you talk to me with such rudeness sometimes. I realize no matter how much autism there is in your make up, there is just as much "normal teenager" in there as well.

I worry about kids offering you drugs or making fun of you and you not knowing it. I worry about you not feeling the need for friends, but you tell me that you like doing what you want by yourself. I'm happy you & Noah are talking computer games & starting to want to "hang out". Who knew it'd be 14 years before you wanted a play date? I love how when you hug me or give me a kiss, you have to bend down to do it. My big boy. Your daddy always asks me don't I want you all to become men one day. I always look at him like he's grown three heads--Umm NO I DON'T! Men have their own lives that moms aren't privy to most of the time. Who will help you? Who will see the situation UN-literally & guide you through it? Who else will call me Julie like you do?

It's one thing to leave my own life up to God. To realize my part in His plan and allow my control over my life to be usurped. But I carried YOU in my body. I prayed and talked to you before you ever left my body. You were all I had when Daddy & I started out. Just you and me alone all day waiting for him to come home. I've been there when no one else was. I talked you out of meltdowns, snapped at people who stared too long, and I explained your behavior to others in a way to help them understand you better. I helped set your course in the way I felt God might want it to be. But to have you grow up, means I have to give up steering your course and turn it over to God. That is much, much more difficult for me than giving my own life over to Him. To pray from afar? I have to let you go little by little and it's hard for a mommy. I guess that's better than ripping the band-aid off all at once though.

That band-aid brings me to you Carson. You are my baby that I brought home & I wanted ten more right then. You are so perfect in my eyes. Your laughing spirit makes me so happy your middle name is Isaac. This week I've been working on school things here for when you come home from camp. And it's not been easy son. I'm finding answers I didn't want, nothing is as easy as I hoped it would be if I was organized and I just want to hurry up and have you here. All my chickies in the nest. Daddy is there at camp with you right now. He said you saw him and were all smiles.
I know you realize you're coming home this weekend. I'm not even stressed like usual. I'm just waiting patiently for you to get here. I need you to be where I can keep you from scraping your knees up constantly. I need to be the one who puts medicine on your owies and who knows what your cry means you need. I hope you learned things while you were at camp. I pray when you get back things are better for you & for us as a family.
We love you so much CarCar.

So many things will change here Carson, but I'm ready. I'm ready for God to give me the reigns back. I've learned how to get to the peace that passes understanding. You being gone for a year, you being hurt either by someone else or their stupidity, it was a direct message from God that I have no control over this. He has this. Your mommy is a realist, and she hardly does anything without putting an efficient twist on it. If I had no control, than 99% of the time I knew this was ALL God's plan. That even if you were hurt when I had left you somewhere, God had plans for that event. Godly things would come of it. And I would never, ever in my mommy mind know what that could be, so I left the big stuff up to Him and concentrated on what He asked of me. To love Him with all my heart, mind, soul and spirit.

Carson, people have asked me and my friends all year, "How is Julie this calm?"
I was never happy you were away. But over the years I've learned to be happy wherever I am. It's all relative. On the side of a highway, you find the bad that didn't happen. When your child was hurt, you find relief in that someone found it and reported it.
I don't have all the answers Carson, and you and I will butt heads when you come home, I'm sure of it. There will be hard days, I'm sure. Days we both cry. You, Daddy & I have many, many years together still. But that's my job. God asked me to be in charge of helping you be the best you that you can be. So I want you to know, that I'm on it. I will NOT fail you. And when I can't be there, God has you. I'm so excited that while things won't be much different with you home than before, that God says it's time. So that tells me, there are plans to prosper you my baby.

Grayson Matthew--boy were you a surprise. And you continue to be one. Who knew that God had been holding you back waiting all those years to give you to our family when you were needed the most?
Papa died suddenly the month before you were born. You were such a gift from God. Nana cried a lot when she held you at first. She was so sad that Papa would never know you. But I told her that Papa met you before any of us did. You are such a ball of happy energy that never stops wondering and trying to please us all. Your spirit was sent from God to our family.
You're in your first week of first grade when I'm writing this letter. New school, new teacher and getting ready to share your bedroom with Carson.
You two have always been buddies. Since you were born Carson has stuck pretty close to you. He was always & still is, so very easy with you. Your prayers for him every night to keep him safe are like music to my soul. Your brothers are both lucky to have you. One day they'll need you ,but I know right now they give you a hard time. Just know that they love you and how different you are from them and how you are always so loving with them.

I see all that you will have to know for school and your Daddy & I see how different of a world this will be for us. Right now I worry that you don't know anyone at your new school & at church you only have one or two friends. You love people so much that I hate to see you left out or struggling for friends to include you. I love the little man you are right now. You started out so shy and wouldn't talk and now you're volunteering to lead prayers in your Bible class! You're so smart Gray, and your mind sees things as being so easy. You're eager to learn and we know you'll one day want to play sports. We've never been in that parenting world yet of soccer moms & dads but we know you will open new doors to our family with your smile and personality that people love.
One day I would bet we have a house full of your friends & while I'm feeding them huge amounts of food, you'll be including your brothers in the fun. Your heart is so tender & so big and full of love. You light up the room son, and one day I know all my worries will be for nothing and you'll be king of all the playgrounds! It's hard to imagine that as you start first grade, Jack is starting his freshman year in high school. Or that Jackson will be 18 yrs old in 4 years. That Carson is taller than me and weighs what my drivers license says I do.

The last few days were tough, but the twinkle in your eyes, all of your big, brown, mommy eyes, give me the strength to get back up and do the whole mommy thing again tomorrow. Even when I have a headache, or you're sassy, annoying or loud, I still always want to be your mommy. So remember that forever when you're reading this my three sons.

To Do List

My "To DO List" is getting longer instead of shorter.
I keep thinking of things I need to do before son#2 comes home for good. Or even before his next visit on Aug 31.

I ordered the new seat belt locks for both cars--$25 on Amazon.
http://www.amazon.com/Buckle-Guard-Seat-Safety-Black/dp/B002XUYF9C/ref=pd_bxgy_ba_img_c

We'll probably order the fridge lock after payday. It was rated rather high, especially by people with Alzheimers keeping their significant other out of the fridge--sounds promising.

I'm cleaning out a closet for son#2 today. This house has the smallest closets I've ever seen and there's no way he can share a closet with son#3. We had bigger ones in college in our first apartment!
I need to get a 3 wide drawer rolling cart for his clothes & several things of hangers. We only have one dresser in this house--ours. Long story short, it has saved floor space for kids to have more room to play--hence the Rubbermaid drawers in the closet.

I have door knobs that we've taken off & turned around so I need to get those changed back. I really need to find a carpenter & get a quote ASAP on building a small pantry for us so that it's done before September 26th.

I have a million phone calls of people to notify, school papers to fill out for transferring him back etc.
I've made doctor appointments for the 27th already to transfer handling of meds.

I need a new trashcan that has a lid that swings but mostly stays shut so I can leave it in the house & not have to put it in the garage as well. I could use a new can opener so that lids/cans don't have the sharp edge that have caused calls to 911 in the past with son#2.

I'll probably need some more Rubbermaid that fits under the beds for toy storage when we unbunk them this weekend. (Lord, a small prayer that our backs hold out during that.)
I need to either find new, happy homes for all my plants or see if realistically they are safe on top of the fridge.
I've really enjoyed having plants again, but son#2 loves to tear the leaves off and eat the dirt.

I probably need to let our not so loving landlord know that the gate on the fence is sagging and since son#2 is a flight risk, so is the gate. And I need to let her know there is something wrong with the garage door--we have to manually make it go up & down.

While all this sounds overwhelming (and that's not even buying a truck load of diapers/wipes & gloves) I am trying in the midst of all this prep, to take into consideration how sons#1 and #3 start school in two days. Getting their supplies ready, make sure they have enough clothes/shoes and talking them each down from nervousness as they each start a brand new school.

Signed--
Looking Forward to Finding My New Normal ASAP

Progress

prog·ress

noun
1.
a movement toward a goal or to a further or higher stage: the progress of a student toward a degree.
2.
developmental activity in science, technology, etc., especially with reference to the commercial opportunities created thereby or to the promotion of the material well-being of the public through the goods, techniques, or facilities created.
3.
advancement in general.
4.
growth or development; continuous improvement: He shows progress in his muscular coordination.
5.
the development of an individual or society in a direction considered more beneficial than and superior to the previous level.

We're gonna go with definition 5 today folks.
Son#2 *has* made some progress since being at Camelot. He can keep his clothes on, the majority of the time. He can put his own shoes on himself. He will use a fork or utensil while eating. His outbursts are less frequent. He's getting better at waiting, unless it involves food. And while son#2 hasn't mastered his anger, the higher powers at Camelot are talking discharge. He will have been there ONE YEAR on September 26th.

The "powers that be" (PTB) will be doing his annual review on that date, and we've been given a heads up by Lolly the therapist that they probably can't find a reason to keep him. We were told if we start to come to therapy once a week, (4 hr total round trip) OR take him on overnight passes more often, we might be able to draw out the time he can stay. Hubby & I feel we logistically & financially we can't play the game that way.

There have been changes at Camelot that make it difficult for me to feel as comfortable with him being there as well. The director is now in a different job & I truly felt she had the kids best interest at heart. While I don't know the new director & can't question her motives, I feel less comfortable than I did.
Toya, son#2's main, favorite of all people, staff---was let go. She was put on leave after a director of a different cottage observed her with son#2 and felt she was being too rough. I wasn't there but can tell you, I'm sure that wasn't the case. Toya has been out with our family on outings & for meals, I've always felt she was helping son#2 & forever patient with him. Not to mention the fact that she has a mentally challenged sister that is an adult now that she helped raise.
Camelot found her not-guilty, but because of this person's wording in her report, a complaint went to OCA. (Oklahoma Child Advocacy) So now, Toya has been on un-paid leave since first weeks of July, and she recently got a letter terminating her from Camelot. Which is very disappointing to me since in December when son#2 had such horrific bruising & OCA was called in, they couldn't pin down who was negligent or who caused the bruising so those workers were allowed to stay on.

I called OCA myself & left messages saying I'd testify to how I felt Toya did with son#2. And I sent her a character letter, notarized and ready to go. Poor thing needs to clear her name to still work in this field, even if she can't get back at Camelot. We'll see how all that goes, but son#2 has adjusted really well to his new staff and seems to be doing okay. So that's a relief to me throughout all that.

Having son#2 home sounds divine in some respects & scares me in others. His anger still isn't under control completely. There are many things here that need to be addressed before he's here full time & the time clock is ON! One of which is the small problem of the fridge & pantry. And then there's not enough bedrooms for everyone to have their own. I may start a change jar to save for a house.

Life is moving on, school starts the 23rd of August here. Son#1 is a freshman, son#3 is starting at a school by our house and then it closes next year. I tried to get him transferred to one that will stay open so he doesn't have to keep switching, but the planets didn't align on that for me.

All, in all things will be changing for us. Son#2 we are 95% sure will be coming home at the end of Sept, early October. Progress has been made, we've all learned a lot and God had a plan. I love the idea of less bruises on son#2 and being able to see what he needs. But with that comes so many things I can't control. His anger is one. There's all the walks he's used to, having to stop the other kids schedule or what I'm doing to take him for a walk to calm him down is going to be new. Get him re-enrolled in school here, maybe find a place he can go half days after school. Where he'll have time alone in this house, I don't know. Keeping him from eating cleaners and putting all my knives and soap in the kitchen away, will be a step backward in adjustments. Everything locked back up, will undoubtedly drive us mad at the beginning, but this *is* progress. I'm not in on it yet, but there's plan because I have faith someone bigger than me knows what's going on.

Ten Things Wednesday

Ten Things Wednesday, Yeah WEDNESDAY--I'm thankful & it doesn't matter what day it is that I get around to writing about it.


1. MY BABY WILL BE HOME IN TWO DAYS!!!!!! Sure other stuff can happen to prevent that, *cough/Satan/cough* BUT, I chose to think positive & have faith and BELIEVE God wants it & with our faith, it will be truth.

2. I'm so thankful for air conditioning. And that includes borrowed window units.
It makes me a nicer person too.

3. Some people don't have good bus situations for their school kids, but we've been really lucky to have not good, but GREAT bus people. Some have moved, some have passed on. But we still have good ones here & they always go above & beyond. This time they stepped up letting us borrow a seat belt lock for son#2 this weekend.

4. Thank you God for terrific friends, family & church family. Listening to me whine, stress & flip-out. Always there to talk me off the ledge & help problem solve. And without all of our friends, we would never have made it through this 9 months son#2's been away.

5.I'm thankful for my boys---without them I don't think I'd smile & laugh as much. Sure three kids is more of a handful than one. But I'd rather have more the laughs & memories. They are so hilarious & make me crazy all at the same time. Life's stressful and to have them distracting me & keeping me busy helps keep me up in the happy, rather than down in the dumps.

6. I had a friend who's young 3 yr old daughter was accidently hit in the head with a golf club last week. She had surgery & has recovered amazingly well! A true miracle. It was such a scary situation to hear about & see. I'm truly very thankful that God had His hand on her & the doctors.

7. This summer has been so different already from past summers for me. It is NOT my favorite time of year. I detest it. It depresses me. Seriously.
But this year, there's a little less stress, no summer school so we set our own schedule & we have an extra car so the kids & I aren't home bound all day.

8. I have reason to also give thanks that son#1 is STILL eating homemade grilled cheese & loving it! He is saving me some money & making some other small concessions on yogurt. Baby steps---but the first baby steps since he was about 6yrs old. I'll take it.

9. We've had two elders here in our home congregation that have health scares recently. I'm excited to see them doing better & better with time and prayers. The power of prayer & an earnest heart is so wonderful.

10. Mothers are a strong breed. Mine has great endurance & when we need her, she comes to the rescue.

Jesus Take The Wheel

Best to just jump in and rip the band-aid off.
It wasn't good people. I'll just shoot straight with ya. I wasn't stressed about son#2 coming home for a visit again, I was stressed trying to get all of the end of the school year crapola done. (Yes mom, "crapola". It rhymes with crayola.)
In fact, I was SO very happy son#2 was coming. I had big plans. I cooked all day Thursday and made his favorite casserole, veges and cookies. I had dinner ready for when we'd get home Friday. I couldn't even stop smiling if I'd wanted to Thursday.
Friday, well, first God blessed us with clouds on the trip up because it was already humid and 80 degrees. Therapy was at 10am and son#2 was looking SO good. We were all packed up, checked out around 11am, had the big bag of his meds and were on our way. We thought we'd stop at the halfway point on the way back in Stroud at their McDonalds for lunch to eat & let son#2 stretch his legs. I had *just* taken a cute picture of all my chickies in the backseat and sent it to my friends saying that my heart was singing, when "it" happened.
We blew a tire just after getting on I-35 again. The one tire that was old and original.(The Sheriff said the tire nuts were rusted on.) We had heard a "POP" sound like something hit the back end of the car but cars & trucks were passing us so fast, we assumed it was a dirt clod or something. (Apparently it was a plug in the tire and it had popped out & the tire lost air pretty fast.) As soon as we pulled over, the clouds disappeared. Of course.

I called for the auto-club, and warned the police where we were on the highway and that we had two Autistic kids in the car--3 kids total. Does that seem unwarranted to you? The dispatcher thought so & let me know they did not have the man-power to have someone come & wait with us while we were changing a flat tire. I said okay, I was just giving you a warning, and politely hung up.

BRIGHT SIDE NOTE: I have been told, the Oklahoma Highway Patrol was not happy with the way they handled the last incident we were involved in bringing son#2 back last time. SO they will all be undergoing training in how to deal with Autistic persons. I cannot tell you how happy I am to think we went through all that horrible mess, to help someone else later down the road so maybe their experience, is bettered in some way.)

I think Hubby had joked with a friend just this week that we were going to try and get the police headcount down from 12 to 2 this time around. We are nothing if not truthful.
Two uniformed officers came. One was a Sheriff & stopped to check on us after stopping a teeny, tiny, old lady in a Cadillac just to make sure she wasn't a teenager stealing the vehicle. And the other came for back up, all before the auto club guy showed. The AAA guy was impressed that the police came (it seriously IS not a good highway to change a tire on yourself and they told us this AGAIN.) and not just one but TWO.
After I had made these initial phone calls, I called Camelot immediately to let Lolly the therapist know what was going on. Just in case someone had to come get son#2. Turns out we'd passed Toya, our son's staff member/miracle worker, in the parking lot without seeing her. She heard what was going & drove out to help keep son#2 cool & calm. It was SO nice of her on her day off. She loves my baby so I love her.

After we were on our doughnut, (Which son#3 was *dying* to see for himself--envisioning a real doughnut--he is indeed my child.)we followed Toya to a nearby Wal-Mart to get a real tire. We weren't taking three kids home with a back spare for 2 hrs.
Turns out that first (yes, FIRST) WM, didn't have a tire & lube bay. We headed to the next one (#2), again following Toya, and it was just a small Wal-Mart Neighborhood Market. Fail!
We did about 20 mins more of driving, with hungry, very tired, hot kids in the backseat, and found ANOTHER WM(#3). Toya and I go in, while Hubby took the car info down about the tire. I had promised the kids McDonalds, and it turns out this specific WM, only had Subway. Damn those healthy buggers! Son#1 had a meltdown, son#2 quickly took a lady in the next booth's bun off her sandwich and scared her half-to-death. Luckily she was good-natured about it all. And about the time Toya & I started to get it under control, Hubby comes back to say, that the automotive dept computer *says* there's a tire there to fit our car, but they can't find it.
So we packed up kiddos and took off to ANOTHER WM.
Toya again leading the parade. (And adults still having not eaten or drank much yet.) But at least we're keeping son#2's demon's at bay.

2pm-ish
It's 90 degrees by now. We get to our fourth WM, and yes they have the tire, and YES they have a McDonalds. We sent poor Toya back off into her own life to enjoy her weekend off. God bless her with something. She deserved it. Second lunch for kids! Yes, we're hobbits. While Hubby was off dealing with the car/tire issue, I got the kids eating and some very nice lady came & asked me if I needed help. She looked so concerned for me. God bless her but there was nothing she could do at this stage unless she had a bag full of money and big ol' chill pill for mama bear!
We walked around in that WM for 2 hrs. Son#2 was over-stimulated and finding strange things like ladders he'd take down that tickled his fancy and the other two with giant cases of the "Gimme's".
I think we spent the majority of our time on the fan aisle. It was the warmest WM I've been inside in awhile. Of course.
(Oh and a big fat thank you, to the goobers that left a used Big Gulp on a shelf near the fans complete with nasty dried out, opened package of Whoppers. You made son#2's day & that hunger I was starting to feel went bye-bye. And whatever idiot boy came up with putting all the S'more makings like Hershey bars back by automotive---THANK YOU TOO! I owe ya big time. I thought that'd be a safe part of the store since the other food half was definitely off limits. But NOoooooooo! Thanks for that.)

We also realized during these trips to different Wal-Marts that our battery cables needed replaced because it's not a great connection. We lost the clock and the cigarette lighter. Which means no charger for the dvd player or phones or Tom-Tom. Of course.

4pm
We made a decision & called Camelot. We were going to take son#2 back to camp. There was no way in our mind that he'd get in a hot car, in prime Memorial Day weekend traffic and drive 2 hrs back home with us--eat, shower & go to bed--turning around and leaving the house Saturday by 8am again. It was too much. We had wasted our day & never left the city. It was so, utterly disappointing. I wanted to cry, puke and slap somebody all at once. I would never have been as sane as I was through all of it (and I'm pretty sure Hubby questions that.) if I didn't have my Prayer Warrior Chicks. They were on it. We were texting & they were lifting me up in prayer when I just didn't have the energy myself. God is good. It was such a long, hot day. It probably sounds pretty tame in comparison to the other incident, but you've never spent a day chasing after my three sons in a Wal-Mart. And I bet if I let you, you wouldn't or couldn't do it again. It was safe & air-conditioned.

4:30pm
We took son#2 back to camp. He was fine with us leaving then. I know he was so tired. He kept yawning & he's the Energizer bunny. I told Lolly when I handed back all his meds I'd been tempted to take the whole bag myself to calm me down. She laughed. I didn't.
The traffic was not nearly as bad as I thought it'd be on the way back to Tulsa, but the wind was causing some trucks trouble with keeping on the road. I was so jumpy and stressed with any bump or noise the car made. I think I drove my husband batty. (**see below**)

7pm
I am happy to say we were SAFELY home. Son#3 kept yipping happily when he saw things he recognized,that we "were back in Oklahoma!" and how we needed to take the subway the next time we go to see Carson. Hubby and I agreed it'd be smart to dig a tunnel for a train. I might do that this summer.
I wish I could tell you our story ended her. It didn't.
We ordered a pizza when we got home & seriously I can't even explain the drama. They called me back immediately asking for the address to confirm it was for delivery. It would be a 35-45 min wait. Sigh! But when it'd been an hour and I could peel myself off the couch I called back...

Me: "Where is our pizza South Broken Arrow Papa Johns?????"
PJ: "Umm well no one put delivery on it, it's been sitting here."
ME: "What's your name?"
PJ: "Drew."
Me: "Well, listen Drew. The reason I know this mess up is your fault is because you called me back to ASK me what address for delivery. SO, I'd like a newly baked HOT pizza that's free. Do you think you can do that Drew?"
PJ: /pause "Umm yeah I think we can. We will. I'll do that."
Me: "Thank you. I'll tell ya Drew, I just spent a very bad day in a city I didn't want to be stuck in ever again, and it's still a pretty bad day. I haven't eaten a bite of food all day and it's now 8pm. I want you to know I know it's not YOUR fault Drew but I'm yelling at you just the same. Okay?"
PJ: "Yeah okay. I'm sorry."
Me: "Thank you Drew. Now go make me a pizza."

For those of you who can't picture ME saying that & actually standing up for myself---you can bet your sweet bippy I DID say all that--100% true! It was NOT the day to mess with me. And this location had done this SAME thing to us the LAST time we got back from the highway incident with son#2. Of course.

9pm
Camelot called. After we left & son#2 was at dinner he got upset and had to be put in a hold. He knew he was supposed to get to go. But WE knew he'd never have made it for 2 more hrs in the car. It may not make sense to you, but I beg you not to judge that. My big mama heart wanted him home. I wanted to squeeze him & love on him all night long. But the day would have gotten worse. And we had two kids in the car besides him that were exhausted & desperate to get home too. They were sad too. Son#3 broke my heart writing me a note last night that I should never leave son#2 at camp again.

Camelot called again today. Son#2 bit a nurse & they had to pry his teeth off her arm. He's mad. Not the usual staff--holiday weekend. And he's not at home. He knows. I know. My heart isn't singing anymore. It's sad. Very sad. I know I've written a lot & you wanna stop reading. I know I've said this before, but it warrants repeating.

Autism can warrant pity or garner sympathy or even support. But it's not pretty day in and day out. It's the screaming child at the supermarket/McDonalds, that didn't get their way or you didn't do it the same way for. It's the child no one understands or who people stare at or find uncomfortable to be around. And difficult to even like all the time. Some people feel uncomfortable with what they can't fix. They may like you, but they just don't understand. However, it is what it is. And knowledge is power which is why I let you in on all the ins/outs sometimes. It sure isn't because I like typing it all out to relive it. Knowledge can change behavior and that excites me. I don't feel I can change the world but I can help change mine. Sometimes.

**For you church people I kept thinking of the song about "The winds and the waves shall obey Thy will, peace be still, peace be still. Whether the wrath of the storm tossed sea or demons or men or whatever it be, no water can swallow the ship where lies the Master of ocean and earth and sky. They all shall sweetly obey Thy will, peace be still, peace be still. They all shall sweetly obey Thy will, peace, peace be still."

New Med Trial

I wanted to give you all a little update on son#2's latest issues at "camp".

Since the incident on the highway with son#2, Hubby and I have discussed what we think we need to see in son#2 before he comes home to us.
He has to be able to control those impulses to harm himself & others when he gets upset, doesn't get his way or gets uncomfortable.(Too hot, hungry or diaper issues.)
He's been on his "good med" since 2006. Unfortunately the main side effect is it causes him to be thinking of food continually. Which leads to weight issues. With him having lost so much weight at camp, we felt that was a good sign it was controllable.
However, the inability to control his other impulses when he doesn't get his way, isn't healthy for him or anyone else around him. And the "good med" doesn't seem to be able to curb all of those. So Hubby & I decided to talk to his therapist about trying something new to take the place of the "good med" while he is in a controlled environment like camp. In the past we've been able to see within one day if a pill/med would work or not for him. But this time the doctor didn't wean him off the "good med", she just jumped in cold turkey off one, and onto the "bad med" starting  little by little increasing it's dose.

 There has been no change in his behavior for the good. It's all been steps backwards and if anything has caused more damage in progress. He is taking his clothes off again, the holds were more frequent & for longer periods of time. And the first three days he barely slept at all.  I was ready to abandon ship last Sunday night when during a hold son#2 banged his head on the floor and split open his eyebrow area. Of course he wouldn't allow them to apply pressure to stop the bleeding. But once he calmed down & went to sleep, the nurses could see it didn't need stitches. That incident just set the tone of the entire week. It's been one phone call after another; every day bringing more phone calls & worse incidents involving his anger and aggression. One of the hardest weeks during his 8 months away for me. (That's right folks, it's been 8 months!)

We went to see him on this Saturday the 28th, and he was so happy to see us. He smiled, laughed and held tight to me. He walked us around the courtyard lap after lap, holding on to my hand or arm. And sometimes just smiling & jabbering up a storm. It was so great to see him happy. He even let us redirect him verbally when he veered off course or tried to duck into the cafeteria early. But because of his behavior that week he lost the privilege of going on a pass with us. As we left, the director stopped us for a brief chat. During that time, I guess son#2 got upset with us leaving after lunch & he was in another 20 min hold. Later that night they called to tell us he had shattered a window in his bedroom with his head. He was actually fine, but the window had to be repaired Sunday. We've had an average Fri/Sat/Sun of four phone calls a day/night.
This morning they called a little before 9am to tell me that he had been in a hold at 1am and again that morning after he woke up. BUT, the saving grace is this morning the doctor is taking him completely off of the "bad med" and putting him back on the "good med"!! Thank God!

What I believe has happened on this "bad med" is a placebo effect. It's as if he has had no medicine in his system at all. As the reserve of the "good med" has leeched out of his body, we're left with the behaviors we've seen when we've taken him off all meds once or twice in the past. Carson Raw. And it ain't pretty people. Autism can be an ugly beast when it's in the buff.

It's difficult as a mommy in those situations to be far away from your children. Especially when they can't speak for themselves. Part of the conversation we had with the director Saturday was about the continued bumps to the head in the same spot. Which in other kids with the same issues as son#2, has gone on to cause a seizure disorder. So it's important we get the aggression under control, especially since the obvious end result we want to see is him home with us. It's been a tough 10 days but I'm happy and so very relieved to think we're over this hill. I got another call this afternoon that son#2 was in a hold, but the "good med" should start building up in his system soon and hopefully with that will come less and less meltdowns. I thank God & hope that we are on our way down the other side of that hill. Prayers are welcome & appreciated.

Happy Mother's Day...Early

I've wanted to write this post for a long time now. I've been sitting on it, mulling it over and trying to find just the write words to convey the picture I wanted to share.
Today seemed right because a very sweet family we know, is in San Diego today with their 5 yr old son, who is getting a pacemaker put in. Gavin is strong and his mama is even stronger.
Another child in our church got to come home from the hospital where he's been for months in Ohio. It was so sweet to see him with his whole family Easter Sunday. Gage is strong and Kris is even stronger.

When it was time for us to make the decision to let son#2 go away to "camp" and get help, everyone asked me how I could handle such a thing. All I know, is that God's good. Good enough to help me when I surely couldn't help myself.
When I went to the Bible to look for an example of my inner turmoil, I saw God's sacrifice of His son on the cross, I saw Job and his suffering of loosing his wife & children. Surely my own situation could not compare to the gravity of those specific examples. My child wasn't going to die, but it sure felt like I might. Then one day while talking to a family member, the realization hit me like a ton of bricks.
SARAH.

Have you ever noticed or thought about Genesis chapter 22 where God calls Abraham to sacrifice Isaac, how we don't hear one peep from Sarah, the mother? I feel relatively sure one of two things occurred in their little tent home that day. Either Abraham took Isaac with him and did not tell Sarah what God had asked him to do, OR Abraham and Sarah had some words.
I would think, that should the later be the case, there would be a few more chapters in Genesis if God felt that was helpful to us, but it's not in there. I double checked.

God asks the FATHER, to take Isaac and use him as a sacrifice. Kill him. And the next morning Abraham sets out with his son. So that means Abraham had to sleep on it. (And possibly talk to his wife about it.) Assuming he could sleep.
It took THREE days to reach the location to be used for sacrifice. That's a lot of thinking time. As most of us know, the story goes along that God stops Abraham from sacrificing his only son. Not ONCE is Sarah mentioned in the story or the 22nd chapter of Genesis.

What about this, what if Sarah knew what Abraham was doing? What God had asked him to do with Isaac. What if she had peace, faith and trust? That she just knew God would take care of her son. She was human. There had to still be tears and turmoil over all of that. Sarah waited SO long to have a baby--to give him up? Second guessing--"Did Abraham hear God right? He is getting older. They say the hearings the first thing to go..."

Mary the mother of Jesus had quite a job requirement--Mother to the Messiah, virgin mother, let him go to the temple and be with his Father, when I bet all she wanted was to hold him close and keep him with her. Fast forward, and she was at the foot of the cross, watching her son suffer a horrible death at the hands of others. Was this what God chose her for? To watch her child suffer? Why would God think she could do this?

Maybe He chose Mary & Sarah--and other countless strong moms like Elizabeth and Hannah and women I know today--because they had tremendous FAITH. He had a hard job that needed to be done, and he knew man usually likes to think they can do everything on their own, but these women, THESE WOMEN, would turn humbly to God. They'd seek him in prayer, thanksgiving, question AND doubt. And they would give Him, the glory and adoration.

Amazing! As a Christian we strive to be as Christ-like as we can. Far, far from perfect, we just don't make him proud some days. I cannot get over what a privilege and a blessing for a woman's faith to be picked to handle such extraordinary things! I'm humbled by Faith, Kris, Kim and countless other moms I watch and know. That God saw to it, that your spirit was so specially made for this difficult job. A job that sometimes makes you feel alone, angry, confused, worried and thrilled beyond any measure--usually all in one day. Being a mom is certainly not the most important job in the world, and it is not everyone's cup of tea. It doesn't make us better than any other woman and it doesn't make us less. But even God felt Christ would need a mother for his stay here on earth.

Weekend Visit

Well, our time with son#2 had many ups and downs. I don't regret it--I had my chickie in the nest for 23 hrs.
He was so happy to be going with us Friday. Unfortunately we could not find his seat belt lock, so he was a bit uncontainable in the backseat. But he smiled all the way home. Until about 15 minutes before our exit, when he proceeded to take off his wet diaper and disrobe entirely. Naked as a Jaybird as my mom would say.
Makes you wanna laugh I'm sure, thinking of us maneuvering through the traffic and backstreets of our town trying to keep people in SUV's and semi's from peering down into our mobile nudist colony. It was rather stressful though. And there was poo involved. Not too much, but even a little, is plenty.

My friend Joanie, who was at the house when the other two kids got off the bus, was very helpful in having a blanket ready to throw around son#2 and bring him inside. She had the shower going and wipes at the ready. I have loving and generous friends (Kim, Candice, & Elizabeth) who brought over tons of food for us for the weekend and were key in helping the weekend flow as smooth as it could. Thank you God I wasn't too proud to turn down their idea of meals to help out. Son#2 looooooves, I mean LOVES him some food, so this was an integral part of his enjoyment. And we had some pizza, salad ready for son#2 as soon as his shower was done. He was a happy camper until we tried to make him sit on the potty later & he ran me down the hallway just like a tackling dummy. Loosing 25lbs and 6 points on his BMI, just means he's a lean, mean, muscle machine.
The brothers enjoyed watching the movie "UP" with all of us and son#2 in our bed. He smiled, chattered and laughed all evening long. And we were so grateful he kept ALL his clothes on (except his socks/shoes) the whole weekend! And at bedtime he was a good little boy and stayed in bed laughing and chatting for an hour before falling asleep and sleeping in later than anyone else the next morning. A full nights sleep is never to be taken for granted at our house.

I had worked out I needed to go pick up some MORE shorts for son#2 to take back with him. He gone from XL shirts to M. And his shorts from XL to S! It's costing us an arm and a leg, but I sure can't complain--in fact I wish I had this problem myself! After rushing to two different Wal-Marts and labeling all the clothes, the other two boys went to spend the day (a much longer day than we originally thought) with our friend Melodie and her kiddos.
Son#2 did great on the ride back to camp. He watched some of his favorite videos of Veggie Tales and Elmo's World. And we had smartly packed a lunch of sandwiches & chips on the trip with some juice for him. He ate & was quite happy. Until we merged off of the turnpike onto I-35 heading south and we were 5 minutes from camp and a quarter of a mile from our exit. Our car felt like it hit a bump and we lost acceleration. Our car had power but we had to coast to the side of the interstate. And where we were, all that was available was a guardrail, not even a shoulder of the road. I immediately called for a tow truck, and then called Camelot to tell them we'd be late checking son#2 back in. I asked since we were 5 minutes away and it was about to get hot with no a/c, if they'd come get our son to keep him from being so uncomfortable. They refused, saying we had checked him out and needed to check him back in. I then called highway patrol for a trooper. I also called a cousin who lives in Norman thinking maybe he could come over & give me a ride with son#2 but he said it'd take him 40 mins but he'd head our way. Poor guy, I had to call him back (ever so slightly hysterical) and let him know the trooper was on his way. (Thanks for being a good sport Ryan & rolling with the punches--it'll make you a great dad.)

Son#2 was DONE. He had peed his diaper, he was hot and he immediately disrobed. Cars and semi's were coming so close there was no getting out of the car. This was gonna get ugly FAST. Son#2 had already started to scratch at Hubby who was sitting directly in front of him. When the trooper arrived he angled his car so we wouldn't get creamed getting out of our car & I filled him in on the situation. I asked him to please take son#2 and I down the road to camp--PRONTO. He suggested we forgo any other clothes and just try shorts. I agreed and squeezed out my side and hopped in the backseat to wrestle some clothes on our 11 year old nudist.
That didn't go so well. I stepped in gum, he kicked me into the guardrail or car door, I don't know which, but one of my butt cheeks feels like a donkey kicked me, so I landed somewhere pronounced. Then he went on the defense and started grabbing any flesh he could to pinch, scratch and fight. He grabbed my underarm flab and pinched a huge portion. And bit me on the same arm on the back of it just under my shoulder. He wasn't getting dressed without a fight and he HATES to be held down. All because he was hot. He almost pushed the trooper out into traffic and so he called for backup.

Unfortunately, that brought TEN state trooper cars, two OKC motorcycle cops, and a firetruck. Needless to say, one whole lane of traffic was blocked off on I-35 southbound. I was so worried they would hurt him & I had to keep making it known that he was 11 years old and couldn't talk! (People really never do take us seriously when we say how strong son#2 is.) They needed the TEN TROOPERS to take turns when one wore themselves out. After about 45 minutes they were able to literally hog-tie him with handcuffs on his hands and feet on his stomach in the back of a troopers car. They kept asking me if he'd been bitten by a dog, or if he was on any drugs. It was HORRIFIC to watch all this. There is no better word to describe it all. In the middle of all of this, the tow truck came for our car and their Lieutenant came in plain clothes to survey the situation and introduced himself.

I saw a news crew on the opposite side of the highway going slow & eventually making it's way across a huge grass median to us. I asked the troopers if they could please make them go away. I even told them it was fine with me if they used their guns. I saw the news crew leave and circle back around behind the long line of cop cars and then one of them got out & kept motioning me to come talk to him. I ignored him but after Hubby was done getting the car/tow truck taken care of, the reporter started on him. Poor Hubby, he thought it was a plain clothes policeman. In my husband's words, I FLEW over there after he had only 5 words out of his mouth. I yelled at him, "DON'T TALK TO HIM!" I stuck my finger in this 6'2 reporters chest & started screaming at the top of my lungs and he backed away & left. I remember saying something about did he have kids, this was none of his business, and if he knew what was good for him he better back it up. Hubby says I went from zero to 60. Mama Bear. I find it interesting the police never tried to help the guy.

After the ambulance came to bring a board to transport son#2 to the hospital, he had calmed down. The troopers mistakenly thought the ambulance could/would sedate him. They won't. I knew that from past experience. The ambulance then blocked off the other lane of the highway so our side was completely at a standstill. They got some information and then took son#2 to OU Children's ER. I called Camelot AGAIN, they again, refusing to come get him from there as well. I had by this point found a friend who would meet me at Camelot and Hubby could ride with the ambulance. Then I see another news crew that took up shop in the grassy median and started filming me getting into the trooper car. So if you saw me on the OKC news, I pray they blurred out my face.

Once son#2 got some water, and they uncuffed him at the hospital, he was fine. They still had him in the database from being there a few weeks before when he drank the rubbing alcohol. He ate two Popsicles, I showed up (A HUGE thank you to Hannah!!) with his clothes and off we went back to check him back into camp. Sweet as can be! I wasn't pleased with the treatment and unsympathetic answers I got from camp when I called.

And today I called and let Lolly the therapist know everything. She's gonna call me back later this week. I told her customer service was very unsatisfactory. I did not create the situation, and I thought they were there to be a support to son#2 and us. And to have them practically disavow any knowledge of us, was distressing and made the situation which was bad, ten times worse. I think she got my point.

A lovely, kind friend, who had already given her time the night before when we brought son#2 home, gave us more time & her gasoline, to come get us and bring Hubby & I back home Saturday night. What a very long, no good, very bad terrible day. But because God is good, it was saved from being a total loss. We had great, wonderful friends rescuing us, listening to me hysterically rant & rave and keeping the rest of our clan safe & none the wiser. Funny enough, the evening before on our drive home with son#2, we had discussed if we won the mega million lottery, what all we'd do with the money and who all we'd help in the name of God and Autism. God has such a sense of humor because we ended up not winning (I know you're shocked.) so instead of helping others, we humbly had to take, help from others. Many others. As my friend says, "It takes a village."

Hubby & I have a our battle scars. His neck looks like some cool, red tattoo of Chinese symbols. And my arms, well both sons #1/#3 keep asking if I got tattoos. Ironically, Doctor M at camp, had mentioned Friday, because son#2 didn't seem to show any progress at potty training, that maybe her work was at an end with him. Heads up lady, you can ride in the backseat the next two hour trip we take and see if maybe you find some issues you think you might be able to work on with him. Sound fair?

Home Again, Home Again, Jiggity Jig

January was my last blog? Wow, has it been that long really?
I've been so busy trying to make the most of my time during the days.
This type of day where I'm alone during most of the daytime hours, is something I'm just starting to feel comfortable with & see as my new normal.

This has been a better time for son#2 at Camelot since after Christmas. He's making some progress and other areas the progress didn't go as we planned so we cut some goals down to a more manageable size.
We have little update from the bruising investigation. It *is* over. But the day after the lady turned in her report, she resigned.
Lolly doesn't see that as anything too telling, just that it's such a difficult job. It's one thing to hear about things or know what happens or can happen to children. It's an entirely different matter to see it day in and day out.
I'm hoping that the report has now made it's way to the head of Camelot and that we can discuss that in our therapy session this Friday.

Our passes with son#2 have jumped from 2 hrs/4hrs and then 6 hrs one Saturday at the zoo with all the kiddos. Which other than a memorable trip to the women's restroom, went wonderfully! And now we have him for 23--TWENTY-THREE HOURS--this Friday. We have therapy from 1-2pm. Then once we get his meds & check him out, we will have a two hour drive back home. (4hrs total) Then to have him back the next day, it's another 4 hr trip. 8 hrs of driving in 23 hrs for us. With these gas prices, we may need some prayers and to pick up a money tree at Lowes on the way home!

I've known for a couple of weeks now that son#2 was coming for this visit. I'll be honest, I was SO stressed out thinking about it at first.
He's so used to his schedule at "camp". And he does, no lie, a minimum of 35 fit laps a day. What if I mess up his new meds? What if he needs to be put in a hold while he's here?
What if he slips back into his bad habits the minute he walks in the door?
We've adjusted to the house NOT being Fort Knox in the past six months, we can relax & not worry. To return to that...

Maybe this will explain it better, we have lived at a heightened state of alert with son#2 at all times over the past 6 yrs.
We called it Defcon 4. Anything bigger was pretty deep doo-doo. (No pun intended.)
So maybe you can understand, when son#2 was here one day, and gone the next, how strange it was. What an adaption to go from Defcon 4 to zero. Such a loss, like a death. What do you do with yourself when you don't have to focus so much energy on that one person 24/7?
It's rather like gaining weight as you age. You don't gain an extra 40 lbs in one day or one week. Gradually day by day, you add on to your base number, until one day you realize when you look in the mirror it's gotten to a not-so-great place.

The same goes with Autism. Our "normal" and our children, are all we know. I didn't raise anyone's kids but my own. (Thank the kind Lord!) So my life went gradually to a place where most of the time my house is locked down like Fort Knox. You may think that's a cute exaggeration but not two weeks ago, son#2 was having his nightly phone call with us, when someone had left out a bottle of rubbing alcohol in the office and he drank it.
After hours of worry & prayers from my Merry Band of PW's (Prayer Warriors) and a kind ER doctor/husband of a friend, we knew son#2 was okay even before he got home from the ER at 2am.

Now, I'm over the stress of son#2 coming home....we're literally get a chain/padlock for the fridge. Life will go on. It's 23 hrs---we're going to enjoy it, and be that exhausted happy at the end of it. I plan to drink in every second of it.
All the "what-if's" be damned. We'll go to this high, and then when he's gone back to "camp", we'll go to a low for awhile. Unfortunately, that's life. It ebbs and flows, peaks and dips. Ours is NOT the only one. I know parents who are doing heroic things like dealing with physical issues their children daily.
But he's my baby and this Friday by dinner time, all my chickies will be in the nest. I'll survive, he'll live and we'll enjoy as much as we can out of the entire thing. It won't be easy, but no great thing ever is right? Just think about planning a wedding...

Ten Things Wednesday

1. Son#2 is doing well lately. He hasn't had anymore incidents, knock on wood. And I've come to the conclusion that his bruises were more likely from a teeter totter or such thing that he probably did to himself. I think the negligence probably came from the newbie staff member not keeping an eye on him or reporting the accident that occurred. The investigation is still on-going, but I'm already assuming, most likely we will never know.what truly happened.

2. I'm thankful to feel 100% physically better now. You can handle things so much better mentally when you physically feel better & I'm sure not taking that for granted. Test results back, and I don't have rheumatoid arthritis or Lupus. I have some strange thyriditis. Hashimotos? Whatever it is, there's a medicine for all the spasms so I'm feeling quite good most days. I'll take it! So many people have much worse going on daily and I have bigger fish to fry. Onward & upward!

3. I am thankful that my weekly Bible study started back up last night & it was quite an interesting discussion about the book of Daniel, angels & the whole realm of heavenlies fighting around us, FOR us. I'm looking forward to the day I can read the book "This Present Darkness" to my boys out loud. I think I'm going to re-read it for myself now. That book was life changing in the way I looked at our lives here on earth & my spiritual connection to God. Thank you Luke Pyron for loaning me the book & introducing it to me many moons ago.

4. I am quite thankful to finally have talked to Dr. M. Son#2's doctor at Camelot. Although I have never met her in person, I can now say I've spoken to her. I do feel she is competent, however I did get the impression she's someone that isn't always listening to us "parental experts". (How could we not be? We lived with our kids 24/7 YEARS longer than they've known them!) But for now, she's listening enough. Last night they called to tell me she FINALLY got to look in his ears and one has some pink tinged drainage. So they wanted permission to start him on anti-biotic.
I'm glad they stopped thinking he was nicking his ear with a fingernail & listened to the Mama Bear that there was something really going on.

5. God keeps whispering to me that fear is from Satan. And if Satan tries to shake you with something new & it doesn't work, he'll go back to what he KNOWS works on you.
I wear two bracelets as reminders, every time I put on my watch. One says "EXPECT MIRACLES". And the other is Jeremiah 29:11
"For I know the plans I have for you," declares the LORD "plans to prosper you, not to harm you, plans to give you hope and a future."

6. I have a cousin getting some help in a facility in Missouri for addiction & such issues. I'm SO pleased & very thankful for him to be accepting help & look forward to seeing his gentle, heart more present in his family's life.

7. We get to go do a therapy with son#2 this Saturday afternoon. It's because Lolly wants us to see son#2 working & behaving with Toya. It'll be a long afternoon/evening, but I'm looking forward to it. We've worked up to a 4 hour long pass now so we get to take him to eat dinner & we're going to try bowling. Wish us luck--first time to attempt that with the kiddos!

8. Ying & Yang. Sometimes I'm Ying & other days I'm Yang. What I appreciate without waver is that whatever kind of day I'm having, either Ying or Yang---my husband is having the other. As infuriating as our differences are to me at times, I do realize it's a "good thing" as Martha Stewart says. When I was so down about son#2---he picked me up. He was rational & all kinds of annoying logical male , while my heart was ruling my thoughts, he was able to be the strong one. I think it's kind of cool the way that works out.

9. Thank you God for entertainment like books, TV & movies/Netflix, games & puzzles. Without it, I'm not sure I would have been able to relax through the holidays as much as I was. It was a nice way to escape reality for a bit and try to take my mind off anything & everything.

10. And last but by far the very most important ---the thing I'm most thankful for, is all of my friends & family. Every single one from acquaintances, cyber buddies and lifers------THANK YOU FROM THE BOTTOM OF MY HEART. I would NEVER have made it through the holidays & the toughest times recently without all those prayers & kind thoughts from all of you. It's been a very touching thing when I get down in the dumps, to realize how many people have sent cards, emails, notes & in-person told me how much they care, wish us the best, spend their own time in prayer & just genuine love I've felt. I can't even begin to describe the kindness. I probably don't deserve it but I will take it as the gift from God it is and pray it continues!

Good-Bye and Good Riddance 2011!

What a turbulent month December was! The usual busy of Christmas was afoot as well as three trips to OKC to see our boy.
In those four weeks we had three "holds" and TWO self-inflicted goose eggs on the middle of his forehead. One golf ball sized, the other (done to himself this Monday) tennis ball sized. It was shocking to see the golf ball one on Christmas Eve & scratches he had on his face from another child there in his unit. But apparently when we left something happened. Weekend help is not as up on the procedures or follow-thru. But weekend HOLIDAY help....I think is much less trustworthy.

When we came to visit this past Friday (30th) we were taken to a new administrator office to meet with the director and Lolly. Apparently the bruises on the tops of son#2's thighs were WAY worse than they mentioned in a phone call.
And they were unexplained. Nothing had been reported that weekend of Christmas. So the bruises were most likely inflicted either by son#2 or a roommate/staff. They just failed to report it so they were not discovered until Monday. The bruises were in an area that is difficult to conclude how it could have been accidental. It's almost as if he was was standing up and someone hit him across the front of the thighs with a 4x6 board.





There is an investigation going on right now & it was reported to a state agency that records these things. They are doing an in-house investigation & are interviewing all involved as well as having written up the workers that weekend for not reporting the incident.

Reality set in late Friday night (30th) and I was barely able to sleep. The reality is, as a mother my worst nightmare could possibly have happened. That we sent him there for help, and someone hurt him & he can't tell us. It breaks your heart.
It's taken this long for me to be able to discuss it whether in writing, out loud or mentally processing it, without crying.
It's rough to think because son#2 can't speak, we may never know what exactly happened. Or if it's a possibility to happen again. We trust the staff that is there 99% of the time. But sadly, I'm still hoping for some blood disorder or such thing. Which we're still looking into.

We're in the middle of discussing if his meds are interacting with one another & causing some extra aggression. It cannot be good for him to have several goose eggs in the same place, aka trauma to his forehead, in the matter of 6 months time.
It just can't. They do neuro checks afterwards, but still. I'm beginning to think we need to buy him an NFL quarterback helmet.

During all this I've struggled physically as well. With an infection that's just now over. And now a bad reaction to the latest antibiotics I'm taking. So needless to say I don't feel a hundred percent mentally or physically to deal with all of this.
I keep reminding myself, trust that God has a plan. While I do not doubt this for one minute, it's difficult to keep one's spirits up when you close your eyes & face the thoughts of the what-if's.
I'm slowly digging out of all this, but it's very overwhelming.
I still don't want to talk about it--too fresh. But thanks so much to you ALL for the thoughts, prayers & well wishes. We appreciate them all. A friend of mine keeps praying for a "hedge of protection" around son#2. I love that. That's all I want. Thank you to our friends and we appreciate the patience & perseverance you've had enduring this with us. He *is* making some good progress so I hope & pray 2012 is much better to our son.