Potential Quota

Son#2 had some testing done right before Thanksgiving. This was for non-verbal IQ testing and to confirm other diagnosis and labels. It's been many years since he was previously tested and his psychologist felt this was a good thing to have done for wherever Carson goes next. Or to help add to his admission packet when and if he applies to get into another place.
I loved his doctor and her patience with him when we went in on testing day. She was able to read the situation and read him pretty well for a Carson Noob.
I couldn't have asked for a better Carson the day we went in, he cooperated as well as Carson does, and his patience had him sitting for about an hour with her. Well done especially with his wariness of strangers now.
Of course I had my fair share of testing questions to fill out---packets with an S. Always my most, not favorite thing to do with my time. (If I was a rich person, this is one of the things I would spend my money on--someone to fill out forms for me.)
I went in this Tuesday for the results by myself and I wanted to share them with you because I think it's important.

The testing shows Carson has definite OCD issues. He demonstrated those at the time of testing with the doctor and I had told her about other OCD behaviors. I have always referred to these phases he gets in as his Manic Moments. Oh boy do they deserve the capital letters.
 "We're having a Manic Moment.", I would tell his sitters at the hospital.
Come in and expect to be handed every item on the desk to hold. Or watch him stack and re-stack his DVDs for an hour. Cute at first, not so much after a whole day of holding random crap he will throw at you.
And not so cute in the past when the Manic Moments decided I needed to stand in one place for 30 minutes and not move. Not even an inch. Nose to nose with him. You don't get to move your phone out of your pocket or use it. Don't. Move. One time son#2 picked me up and put me back in the spot he had me when I dared to scoot over an inch to shift my weight. I stayed put that time.
One of his favorites during a Manic Moment is to un-cross my legs. Even if he's reaching up from the backseat of the car to slap my leg off the other. There was definitely a time when Manic Moments ruled his life and mine. Thankfully they are fewer and farther between now.

Of course he still retains his label of Autistic Spectrum Disorder with Accompanying Intellectual & Language Impairment.
But his IQ tested lower than it had before. While I do not know that exact number from before, I know this is lower. Much. We are nowhere near the number 50 that wonderful, fairy tale places like the Dallas Autism Treatment Center like to see and work with.
Is there a word on the scale of happiness that falls below disappointed?
While I wasn't as disappointed as I have been in the past year with Carson things, this was a little surprising for me, but it's done. If this keeps Carson from being somewhere wonderful, I have no control over it do I? Absolutely none. This was the best Carson I'd seen in years as far as clarity with meds and overall health. I have nothing to complain about but I wish the tests were able to capture a more well-rounded view of all of The Carson.

I could tell by the psychologist's face she was scared to tell me. To disappoint a hopeful parent.
I'm smiling as I type this because I cannot count how many times there have been situations like this and more severe, about delivering bad news about Carson to me, and I am the one who ends up consoling the person delivering the disappointing news.
I took it all in and then it hit me. Carson and I are in no different boat than we were the day before. It's a number. And as the psychologist said--this is based on one hour of one day in November of Carson's life. I liked that. I told her I felt it was like age or weight--does anyone want to be judged on just the number of your IQ? Umm no thank you.

It hit me like a ton of bricks and I scooted forward in my chair and I said to her, "What is Carson's Potential Quota?"
She just looked at me blankly like she was searching her mind for this term.
 I made it up. I asked her again.
"This is his intelligence quotient, what measures what Carson has the capacity to do in his lifetime or future? What is his potential range, his score for what he COULD do? Where's that number?"

 I realized we all have a Potential Quota. A quota is a ration or portion right? So don't we all have a part of us that is still not doing everything we're capable of doing just yet? Doesn't that matter or count?
When you go for a job, your resume shows what you've been capable of doing in the past. The present you, sits in a chair across from them and tells them in person what you think you have the ability to do for them at this moment in time. They have to see potential to see you can be trained to do things their way or trained to do something you've never tried your hand at before. They have to see your past or present to see what your potential going forward for them is.
He can't sit in a chair and answer questions to measure this, so---
WHAT IS CARSON'S POTENTIAL QUOTA?

The doctor tells me there is no test for this as if I was serious. I smiled the dimple smile and said, yet.
There is no test yet.
I think there needs to be a test for kids and adults who function in this in-between world of neurological challenges of autism, Alzheimer's and the like.  Their skill sets are all over the map like missing rungs from a ladder--but it's still a bloody ladder! Because it's too hard to quantify potential to us simple neurologically minded folk, these people are often written off as incapable.  It is easier for us all to just brand them with diagnoses, labels & numbers that deems them incapable of so many things, then it is to help them find what exactly they CAN do.

For me, I believe my son has the potential (or future intelligence if you will) to learn to communicate WITH a communication system of some sort and he has the potential to potty train. He's done so in various forms in the past. Because he is not doing those things now, does not negate the fact that he has the potential to DO them and no number on any test, will convince me otherwise. If he can outwit your slow butt to get a cookie or steal your Dr. Pepper you think you hid from him, he can manage the rest.

I have said this so many times but it's true, so it's bears repeating--Just because my child (children) have things that keep their IQ's from being average (in both directions of that scale) does NOT mean they aren't entitled to live happy lives with PURPOSE & CHOICES that give their lives meaning.

I just wish there was a way to test and quantify the potential of things Carson could do for job skills or for his future. How do you sell your child to admissions at a long-term treatment facility, if you can't help them see your child is capable of learning and growing???
(And don't you dare judge the word sell, because most every parent is trying to SELL universities/colleges & job programs on our neurologically perfect children and their potential aren't we?)

I would love to see our states & country invest in the potential these kids have. Listen to those who work with them, and know them. Look past the numbers on these tests and take into consideration, these tests aren't taking into account all Carson's tricks or if he's not doing something not because he can't, but because he won't today. These tests don't allow for him being out of school and therapies for 3 years and the regression that comes with that.
None of this matters though, or changes anything because the IQ score is what it is.

BUT, my job hasn't changed and is still the same as any other parent's job. Just like my other children, my job with Carson is to get him ready to leave the nest. Our whole journey as parents is readying those baby chicks to leave your nest to go make their own nest. I have an 18 year old, and it isn't easy. My friends and I talk about this a lot. Most parents are fighting to get the best potential out of their child to go to college one day. It doesn't matter if it's college or not, he's still a stubborn 16 yr old who doesn't want a haircut & wants to do everything his way. And it doesn't matter if he's autistic, I'm trying to get him motivated to use his potential just like you are for your kids. That's our job as parents--find that potential & help them use it.
So we keep fighting when they quit college. We keep fighting when they don't want to work nights or weekends but need a JOB. We keep fighting even though they think we know nothing. And we keep fighting for them to use their potential when they don't know what they wanna do with their life.
Twice this week I've been thanked by people working in Carson's world, strangers meeting me for the first or second time.
They thanked me for staying involved. For being a good parent. For fighting.
I honestly never know how to respond to that--you're welcome sounds wrong.
All I do know is, Carson is not your average kid in this situation, and I'm not the average parent in this situation. This is the only way I know how to parent----fight for them. He and I are just bopping along to our own little drummer, in our own little band. Trying to find our happiness potential like we all are
.

A Little Gift

I've been watching people hurry everywhere lately. Drivers cutting off other drivers all to hurry on their way. People trying to hurry and take parking places away from other people because I assume they feel their list of "stuff" is more important than someone else's.
It's sort of the season for the rush and hub bub. I definitely am rushing more lately. In fact the other day I was running 10 minutes behind leaving the house. I was sighing I'm sure and huffing.
Once I got under way I came right on a fresh wreck right where I would have been if I had left on time. Five cars impacted and when I came back through the same intersection almost two hours later, they were still not done cleaning it up. Some holiday seasons just took a different than intended turn and I became instantly thankful for the whole new outlook the scenario gave me. Perspective is a unique little gift.

I usually feel I have a firm grip on perspective because my life is sort of slapped in the face with it daily. However, I started noticing how often people would be in a hurry, or say they were so busy. Random strangers waiting in line with you talking about their "stuff". We all have it. We all have stuff going on. We all feel ours is more important than other peoples--because it's OUR STUFF.  Which makes total sense. There's nothing wrong with it and I'm not judging or coming down on any of us.
But I have some friends I wanted to tell you about. They've helped remind me during this crazy, busy month, that everyone has "stuff", but sometimes it's good to remember the path someone else is on that we hopefully never have to walk.

This Monday, I heard about a child under 10 yrs old, needing emergency surgery for their appendix and now it may impact whether or not this little girl ever has children. And she'll most likely be spending the holidays in the hospital.

I lost a close friend awhile back and it hit me recently--his wife and daughter are facing their first Christmas without him and all his jokes & laughter this year.

Another friend of mine works with the homeless and we've had freezing temps lately. I've seen her friends on Facebook donate or give her gift cards for mittens and hats and all she needs to serve. I'm sure she has tons to do, but there she is, putting her family stuff on hold and buying extra stuff for the homeless.

A family member I love dearly will not get to adopt the baby they thought they would. This is their only Christmas with her.

I thanked a mother of a child in my son's class at school, for the draedel her daughter gave my son last year. She told me I must have the only one left because after her daughter handed them out, another parent complained to the principal and she had to take them back. The parent who complained she was pretty sure was the man who had a swastika on his forearm.

One of my good friends is rejoicing that her son is home from the hospital for the holidays and my other friend is out in another part of the country doing some testing in the hospital with her son right now. 

And last night, the night before my birthday, I spent watching the sunset, looking over the city, at a small funeral. It was for one of my son's friends he knows from where he lives. He's been there since the day we moved in, and I would always say hi. Everyone would be at school but my son and this boy. Always in his same spot. I would always ask him how he was, even though like my son, he was non-verbal and wasn't going to answer me. I'd see him get fed through his feeding tube. His legs were bent but he could walk, but you had to watch for his random donkey kicks.  His smile was like my son's--mischievous. A lot going on behind the eyes. Loved to pull one over on his staff.

He just aged out and was moved to a new place once he turned 18 yrs old early last week.
A few days later he needed another brain surgery to place a shunt. (He had surgery for the same thing just as recently as October.)
His surgery was Friday, but there were no brain waves after the surgery. They checked again Saturday and they had to go with his guardian's DNR.
When I learned about this Tuesday I had just rushed into a meeting for my son over at the high school. I was stunned to learned this boy had died. The mother in me could not imagine not having had his mother there for the surgery. Or how his guardian was the home bound teacher he shares with my son. I was asking a million questions of what would happen to him. I let the social worker know I wanted details of the funeral if there was one. I got the message there would be a small service for anyone wanting to go at the hospital at 5pm last night. My mommy heart kept thinking what if no one goes??
What if no one shows up to acknowledge this child's life? A ward of the state. This child that is so like my child. This child who's parents couldn't cope. This child who's parents will be mailed his ashes.
I had to go. What if I wasn't around? This could be my son. Nothing would have kept me away.

I need to tell you my fears were unfounded. My heart was so full. I kept trying to keep the tears away. This baby had people who cared. People who stood up for him. His staff from where they live came, The nurses, his DHS case workers, Child Advocacy people, other state agency people, past staff that had worked with him who had moved on--all in all--20 people. I began to feel like an outsider. Was I intruding on this celebration of his life with all these people who knew him so much longer, so much better than I did?

The clergy started to hand out programs, I refused so there would be enough for all his people.
We moved outside to watch the sunset, and to raise a flag.
 I had no idea, but this child of 18 long, hard years--had his liver donated almost immediately and his kidneys and heart are waiting for transplants.  

They recited a prayer that is for donation patients. They told us this prayers is not only said tonight during this flag raising but the surgeon says it before they harvest the organs. It is a blessing and thanks for someone who is giving life to others with theirs. They said the flag that says LIFE, also lets all staff know, a donation of life has been made. All my mommy tears came out, I couldn't stop them. This child was loved. I was so relieved. I prayed the entire way home thanking God for the gift of seeing amazing souls working with amazing kids in this crazy, world my son & I exist in. Knowing this child was brave, fought hard and wasn't alone. Kids like he and my son, teaching us all, giving us unconditional love. Even in the end, still giving. 
And ya know what? All the way home in horrific,slow, traffic that took double the time--I didn't care. Any car who was looking to get over, I made a spot. I took my time and I didn't rush.
 

Birthday Boy

It's been months since I've updated. I can honestly say, I have equally appreciated the inquiries about how Carson's been since he arrived at his new place in early March and the space you all have given me who haven't asked. It was a rough time for me, much like when he went away for the very first time. I'm pretty sure I was close to a nervous breakdown. 

Carson has been struggling somewhat as well. He has lost quite a bit of weight and was at one point down to 112lbs. His platelets and white count were both low and he had an almost continual tremor.

There was a bit of time he didn't get out of bed a lot and even had a rash of bed sores because his hip bones protrude so much and he wasn't moving very often.

The nurse has been really diligent at brainstorming with me to try ways to help him gain weight. I really have appreciated all her communication and efforts.

 

Carson is sleeping in a regular bed for awhile now, his arms are healed and he leaves them alone, he has one on one daytime staff, but not night time anymore, and I think he is once again, a favorite among the staff where he is. He has an old TV but no PBS Kids channel all day, so he watches DVD's. Still has his own space which he loves especially when it gets loud. And he really has become attached to his daytime staff. 

While I don't know set numbers, there were probably around 15 kids in total when he arrived, now there are probably 10 just in his cottage now. It's filling up fast. 

No sign of them closing anytime soon that I can see. He is enrolled in Tulsa Public Schools and the plan is for him to begin by going by bus for a few hours a day when school starts. 

He has a therapist that comes by and sees him for occupational therapy every so often. He hasn't been asked to be pushed out of his comfort zone for years, so school and a set routine will be a challenge all in it's own. And one I think he has needed for awhile now. I'm excited to see how that goes. And God blessed us with a previous teacher from BA public schools both boys have had, to be our Tulsa Special Services liaison. 

His new psychiatrist at OU who I like, has gradually taken him off a med they started in the hospital. It's been a month now and his tremors are almost all gone, his appetite is back a bit--especially at breakfast--his weight is up to 119 and he is beginning to be behaving more consistently like himself.  While he is still struggling with manic episodes, (that bring back bad memories & exhaust me almost instantly) I am seeing a glimmer of my Car which lightens my heart.

The doctor has requested new testing to see if his IQ improved a few points. She says some of the type places we tried to get Carson into earlier this year, see an IQ below 50 and think it will require more "care" & effort and often say no. So she thinks new testing--more catered to the non-verbal side of things I believe will hopefully hone in his IQ number and possibly help with him eventually re-applying for placement. I have no expectations. None. I am numb. I hit rock bottom after our last court date and now I truly just try to keep to myself & enjoy the fact that he is in town for any holiday, for any time he needs me and for any time I need a Carson pick-me-up. 

(Which is about three times a week.)

I am late in getting the many pages of paperwork turned in for this testing.

While I was feeling guilty the the last month about that, I realized it may have been for the best to wait until he is feeling better and back to some sort of normal. So hopefully he will benefit from the wait. Maybe that was God's plan. Rest and peace for us both. 

He goes back to the doctor this month to retest his blood. Hopefully that is all improved too. In pictures everyone thinks he looks good. In person, his mother sees--way too thin, eyes hollowed out & his skin/hair have changed a lot. I am praying he is snapping back as we speak. He is smiling much more which makes my momma heart thrilled.

 

In the meantime, I have decided that Carson and I are healing and ready to start moving forward. And since he is actually in the same town with me for this birthday for the first time in many years--we shall PAR-TAY. I never know where he'll be at the next birthday. His birthday last year I spent moving him to Tahlequah. Seems like it's been a long, grueling year for Carson. 

But this is a big one. This one will be the best one yet.

Sweet Sixteen. We may not be getting a drivers license, or partying like most sixteen year olds, but we need to whoop it up. So I'm throwing my baby a birthday party and I'm checking him out and bringing him to the party. We need to have some fun!!!! 

Save the date. I want you to come and say hi. Celebrate with me--his mother-- the pride I feel for having brought such a strong fighter into this world sixteen years ago. See him. Eat some cake. Laugh with us. Partake of some fun Carson memories. Take pictures with him for his scrapbook. Meet people who  care for him. You've all prayed for him, you've worried about him, cried for him,  been angry for him--come enjoy some FUN with him. 

Dear Anonymous

Dear Anonymous---

I have thought on what I wanted to say in response to you, for over a week now. Your words came at a time that I wasn't in a good place. I was very down on myself and feeling like I had failed my son, very sad and really still trying to adjust to my role in my new normal with my son's journey. Any confrontation was causing me to break out in a sweat, my body to shake and my heart to race.
But I think God maybe sent me your heated words at a time I was hitting bottom.
I didn't want to read your words, I didn't want to experience any emotion they might make me feel too deeply and I was completely uncertain of how I would react. But I realized your words were speaking as if you know a lot about my son and I, and I don't know you at all. I don't know where you've been in life or what you've experienced. Or even what truths you do know about me.

Turns out your words brought back ome of my passion--but not anger. None of this is said in anger to you.
While I am at a place in my life I am very tired of having to explain myself to anyone,
I get the sense from your words you're either working for a state agency like DHS or have a loved one that is. And that is something I understand and identify with.
Someone you feel deserves a more fair shake than you felt my words were indicating.

I think maybe it's true what you're seeing is me expressing a more negative, frustrated look at what is happening around my son and I at the present. However, I'd like to point out that while expressing my frustrations, I haven't been calling anyone ugly names or decided to call their office every day and scream and yell at people in my frustrations. We all know there are people who do that. Usually when you leave the hospital they ask for a survey of how your experience was with the conditions and stay. I think my blog post--like anyone's blog--was an exercise of my freedom to express my frustrations at a situation I found myself in. I don't personally believe that if I'd called in to vent my frustrations to an office worker or random person, it would have changed an already carried out situation.  I think a huge portion of my frustration would have been eliminated if I had been told the hospital deadline was going to be completely firm, unlike the previous deadlines. And if I'd been told ahead of time what the plan was for after leaving the hospital. The extent to which DHS has gone to make my son's stay at the shelter comfortable,has eventually made the transition as easy as it could be for he and I both. We're all human and we all choose poorly at times.

For me, my blog has been about expressing or sharing experiences that the average parent is not going through, in a way I would not feel comfortably doing so even with friends, one-on-one. And friends & family DO ask me regularly how I feel about all of this.
Surprisingly as it may be to you, I'm quite private about most of my feelings & emotions.
 I do get many questions on what it's like to live life with two totally different children on the autistic spectrum. And to be completely transparent with you, most of what I experience my own mother would have a hard time believing. I'm a firm believer that information is power, and I personally know of other mother's going through what I am, with my middle child, and if I can help or lessen their burden by imparting information--I won't stop. I'm a firm believer that as human--but women especially--we need validation to feel healed sometimes. We need someone to say they have felt those same feelings or that they know that feeling. It makes us heal faster in my opinion. I believe some mom out there needs to not always hear the happy. She needs to hear unfiltered truth of how ugly living with autism is sometimes. It's not always fair and it's not always an Oprah happy ending. One thing anyone who truly knows me will tell you is, I'm pretty genuine. What you see, is what you get.

But if a child you knew or that was your own, was going through a rare, barely heard of heart condition-- besides reading WebMD, I would hope somewhere you'd find someone to give you the outline of what you might experience down the road. That somehow,  knowing someone is feeling what you feel, might give you comfort in a situation where no parental handbook has been written.

In case you don't know my background,  I went to college and received a Bachelor of Science in Child Development. I started out as a social work major having worked with abused children before and having been adopted myself, this was the area where my interest was--helping children. Having worked in residential treatment facilities, having worked with autistic kids and  having wanted a career in this profession--I am a bit familiar with certain aspects of it. My greatest education is having raised two children at different ends of the spectrum. I'm definitely no expert, but from MY side of this coin, I probably have feelings, emotions and experiences I hope you never have to go through.
Not many people have had their own child beat them up until they couldn't move on the floor. Or try to kick in a door to get to you while you huddle in the dark on the bathroom floor praying.
I hope you never see a child put their own head through a wall or window hurting themselves repeatedly while staring at you for your reaction. I will bet money, that no amount of education, training or experience prepares anyone, especially as a parent for that.

But I have not been as forthcoming on my blog about the positive things I've seen lately.  That may be seen by you as an irresponsibility on my part. I see it as truly a human error or moment of being tired from 6 months in the hospital while juggling my other children's lives and wanting to post an update for my numerous friends and family all at once.
You were reading my frustration at going from being at the hospital for the last 160 days and in on every decision from what color of jello he ate, all the way to what snack motivation we should try for him to take his meds. To go from being in the loop, to being the last to know things about your own child has not left me in a happy place trying to work through the adjustment period.
But I feel like while I aired frustrations, I haven't called anyone ugly names and I've kept myself mostly together.
Expressing dissatisfaction with the way things are being handled isn't a horrible offense.
I've been quite patient and tolerant. I'm not sure if you have children---but the pictures I could show you of what bruises and the locations on my child's body, that he came to the hospital with, could only be nefarious.

My son's DHS worker knows that I work tirelessly for him. In fact, before we ever involved DHS for a special needs petition I had called almost every single facility in this state and the surrounding areas. My first time in court I had stayed up until 2 am the night before, typing up a three page list with all the facilities I had called, the date/time/name of anyone I talked to and why they said no. So I definitely do my part and offer up my help or assistance in any way I can to make their load a little easier. And our judge has been a tremendous advocate for our son and is aware of all every agency worker or any one person is doing to help his case.

What was missing I think from my blog posts you were referencing, were the many times I've asked my hundreds of friends and family to pray for my son's DHS case worker. To give her strength as she has been on this journey for a very long year with us, working tirelessly for him (and many other clients) while he was in the hospital. While I was feeding him and wiping his hiney, she was making calls daily on his behalf.
She knows I pray for her and that my son's prayer warriors pray for her and the countless other people involved in his case & their good work also. We pray for each person who comes into his life, that God might have a hand in them being there. I am fully aware of where the hold ups are on my son's case with getting him moved somewhere. And from what I see and hear, it isn't within DHS. He has limitations that hold facilities back from taking him and the state agency holding the purse strings has the main final say. But when you're eating in a restaurant and they bring you the wrong salad dressing, you tell the waiter--you don't barge in on the chef in the kitchen. You don't hold the waiter responsible, but he IS the one you have direct contact with and who you ask to make the changes for you. And you may doubt from my previous posts about my politeness, but although I have begun to speak firmly, I wouldn't say I have been impolite with my waiter.

I think that leads me to your direct point you made about how I must be suffering from guilt about not having my child living with me. I have no problem owning that statement. I do suffer from guilt as almost any parent does to varying degrees. There's no point in denying that guilt because I will have it forever. I had to make peace with that several years back. And I think that peace that passes understanding was a gift from God.

Now, do I wish my child could live with me in a peaceful way that benefits him AND my other children in my home---definitely.
Do I wish that if he lived with us, we could do enough to make him at peace and meet all his needs daily--yes.
Do I wish that it would be enough and the entire rest of the family wouldn't loose themselves in the process--more than anything.
I saw while he was in the hospital that it took, shifts of nurses, sitters, OT, PT, doctors and me being there almost all day every day---and it still wasn't entirely enough.

Not being enough for your child is a hard pill to swallow.
I would equate that feeling to having to put one of your parents in a nursing home.
Do you want to--no. Could they live with you--sure they could. Would it be enough for you and your spouse to take care of them around the clock---loose sleep at sporadic times, keep them from eating every single thing in the fridge, keeping locks & alarms on all the doors including the bathroom, diaper and bathe them and then you still must go to work, cook meals & tend to the other loved ones living with you?
Would you be able to not loose your mind, marriage or sacrifice anyone else in that home's well being or sanity?
Would you question that decision?
Who means more---your parent or your children?
Do you think if you choose, you won't ever feel guilt about that choice?
I'm not in that position yet--my mother is in a wheelchair and I am an only child, but luckily she has an amazingly, giving family that helps with her more than I can and do. They help me with her, so I can help my kids.

The good news is, my son doesn't need me as much as I need him. He doesn't need me daily in the same way my other children do. When his needs are met, he is happy to have me around or to be in his own world talking to his happy finger.
God allows that to soothe my soul and my momma heart so I can sleep at night.


All these words were not warranted in response to your post. I just wanted to hopefully give you a glimpse or look into where my shoes are standing today and maybe what's it's like to wear them. Hopefully you can see where I was writing from was not a place of anger, but parental frustration and sadness and maybe that's something you could understand or relate to. That maybe, we can see things from each others side of the coin.
 I'm not apologizing for my post, but I want to say again I appreciate your passion for your loved one that I get the impression may work in this area. It's a noble job field and it takes a lot out of a person. Adults hold those jobs, adults chose those jobs & adults run our state agencies and control the outcome of where the funding will go for kids like my son. 
MY passion comes from speaking up for not only a loved one like yours--but it's my child--a vulnerable, disabled child, who cannot express whether or not he has a headache or feels like eating a cookie today. A 16 yr old who can't speak for himself at all in what he wants to see happen in his life.
Sadly, there is a tidal wave coming behind my children. When they were little, the statistics were 1 in 88 have autism. The numbers are greater now. When there are larger numbers of these kids hitting puberty, I believe there will more families struggling and looking for help. It does take a village. I'm happy with the village God has blessed my son with.
I hope that somehow my child's journey not only will ultimately get him the help he needs, but make it easier for those coming behind him and for all the workers that fight on their behalf.

--A Tired Mom

Faith

Do you need your faith reinforced that God isn't finished with Carson's story? Cause I'm not feeling too worried.
I realized after the first TX no, that this is God and Carson's journey and I'm simply along for the bumpy ride as the trumpeter.
But if you need a little pick me up after today's little pothole in our journey-- I have a story for you.

I have a new member of Team Carson (We really needs shirts don't we?!)---she's been a friend for awhile now but now she's my, "Tell em I'm coming and hell's comin' with me!" lawyer.

 That's a pretty long title so we'll shorten that to my Hella Lawyer. She is ready to reign down fire on anyone who isn't going to get on board with what's best for Team Carson.
I can totally say she is a little spicy. And I love it. She's that person that says everything I want to say outloud, where as I hide behind my dimples and smile not saying a word.

So Hella Lawyer happened to be by coincidence going to the state capital today--the day of our 2nd TX decision. After I heard the verdict, I texted her and let know where everything stood. Told her I hoped she could get time to stop by Rep N's office and thank them for the help and update them on the verdict. And let them know that the hospital deadline to discharge him is tomorrow at 4pm.
So she goes to the office of N and just misses him---updates assistant.
Then Hella Lawyer goes to Rep D's office who I hadn't heard back from--but he is my state district rep. (unlike N who just likes me I guess)
She and Rep D's assistant get off to rough start---assistant felt she knocked a tad too much/loudly.
My friend was in a hurry and sort of busting in, in what I picture as a Kramer form Seinfeld way.

Assistant is of a more mature generation and didn't take to my Hella Lawyer's update or questioning of where the situation was at. Or take it as friendly. Assistant called me while Hella Lawyer sat there.
It was like I was the mom, and the principal was calling to tell me my daughter was in the office.
Assistant was so kind to me. She spoke to me in a grandmotherly tone. I filled her in on reaching out via Twitter yesterday (which she let us know isn't a proper way to really communicate) to Rep D.
She hangs up with me--and Assistant proceeds to rip Hella Lawyer a new one.

Hella Lawyer begins to gravel, gravel and more graveling. She said she knew Assistant was smarter than her, she did not in any way mean to address her in a way that indicated anything less.
That Hella Lawyer had worked as court staff before and knew of lawyers that spoke like that. She in no way wanted or meant to use such a tone.
She explains she just got this case yesterday---she was here at the capital for another reason and was stopping in because she happened to be there.That she ran over to try and catch Rep D.
And the cherry on top was telling Assistant she reminded her of Hella Lawyer's mother. What age is your mother, Assistant wanted to know---65 yrs old.
Assistant says she is 72 yrs old and flattered. Feathers are no longer ruffled, they are smoothed now.
Assistant says apology accepted. 

Hella Lawyer still beating herself up, apologizing for anything misconstrued---Assistant says, "We had a small thing--it's over--when are you gonna let it go?"
She's a pistol. You can ascertain which "she" I mean.
Assistant says she is going to look into this for us. Assistant says she has been in contact with Rep D the whole time they've been talking.
And Assistant says it's kind of nice that Rep D knows some people at the hospital.
Yes. Yes that IS nice.

Hella Lawyer and Assistant start to walk out together--they are now on each others Christmas card list. There's a bond now. Assistant looks at Hella Lawyer and says, "Let's get to the important question."
Okay.
Assistant asks her: "Do you know Jesus?"
"Yes. I do. I take my two kids to church every Sunday."
"Then let's see what plan God has for Carson."

So---see, I'm okay. I'm good. God has shown me time and time again---stay the course.
I'm all in.

To Whom It May Concern

I just wanted to take a minute to elaborate on some of the things your team and I touched on Friday in our session about Carson.  As a mother, of course I love my child and wish to see him excel at every single thing he is capable of doing in life. As someone who has attained her BS in Child Development, worked in residential treatment facilities and worked with autistic kids---I want to see Carson achieve every single, possible thing he is capable of, so he can have as much fulfillment and satisfaction that he is able to have in life.

Knowing my son won't live with me for the rest of his life is never something I will have control in because it's not enough for him, but God knows what I can control is how happy Carson can be in his life. And that will forever be my goal. I know we discussed how Carson will take direction and understands more than most people think he does. But of course as any person on the autism spectrum---we have a few rungs missing every so often, on our ladder.

Carson grew very aware of time in school and used to know when to go and take down the bucket of lunch bags and stand next to the classroom door waiting for the lunch bell. He has looked around for people, before opening his teacher's desk drawer and taking a large sip out of her Sonic drink before carefully replacing it and shutting the drawer to her desk. One time he was trying to pull me to the kitchen to start dinner and I told him to be patient and wait---we were ordering pizza that it would be here soon.  Later I got a call from the delivery guy who said he was in our driveway, but there was a naked kid with a paper plate standing at the front door. (This was quite awhile ago in our naked phase.) So although we may not score so high on an IQ test, our thinking reasoning skills have been in practice for 15 years and food is a great motivator for Carson.

Carson has really come back to himself since he has been in the hospital and the wonderful team here has adjusted his medicines. I've seen his attention span lengthened more than it has been in years, clear eyes and I love his affectionate nature has returned, only lashing out when in pain or his personal space has been invaded after he has shown to not be able to do what is asked in that moment.

He has really loved the attention and time so many loving, attentive nurses, sitters and doctors have given him here. It really has proven my theory that he was not really situated before in places with good staff who cared to help him do better. He has felt safe here almost from the moment he got here to the hospital and I have seen him respond to this trust by allowing them to take blood, cast his arm and remove the cast and numerous other actions I would never have thought he would be brave enough to allow. All because of feeling safe with trustworthy people.

Seeing Carson return to the kid I know, who loves to laugh, who can put his own shoes on the correct feet and is happy---has been worth this horrible journey that brought us to the hospital. Carson isn't interested in hurting his own arms, he was always trying to communicate that the bites from another child, were not feeling well. Instead of acting out, I see what I call "Toddler Tactics" now. If you're asking him to do something he doesn't want to do, he squints his eyes closed and will slowly open one eye to see if you're still there--waiting for him to complete his task. He will sometimes make us laugh when he slaps his leg (which is just like a child stomping their foot) when you aren't giving him what he wants. I love that he will rock happily in his rocking chair and watch a cartoon--he loves PBS Kids. His attention span seems longer with the more outside time he gets---he loves to walk/pace. When his pacing circles get tight, we know we're having some anxiety issues and he may end up in his bed making his little dolphin squealing noise. Carson loves his classical music and low lights to soothe himself and his weighted blanket has seen him through many painful moment with his arms while we've been here.

I really just wanted to make you aware that Carson is more than the numbers and diagnosis on the papers you received. He has more to learn with communication, taking care of himself and just how to make good choices. What Carson needs I can no longer offer all on my own. He needs a village of good people with caring souls who want to engage what skills he has, and motivate him to get more from life than he's been offered before. I hope and pray you get the privileged to get to know my son, because I know he has just as much to teach you as you can teach him.

~Julie Hall Swaim

The Christian's Bugle Blast

While finishing some work stuff up this morning and getting ready to go to the hospital-- this hymn popped into my head from my childhood. No clue where it came from. That's how these things happen. But I couldn't stop singing it once it got in there. Such a peppy ditty.
We used to sing it a lot in my church and it was sung at a really good pace.
(As a kid you notice anything that isn't quiet in church services.)
We absolutely had to stand up, Jerry Carpenter didn't allow you to sit and sing Soldiers of Christ, Arise! And I remember there were quite a few verses to it as well.

So this morning I started singing it to myself and wouldn't you know, I remembered every verse. (Too bad I can't remember that password I set up last week for Walgreens on the interwebs)
Usually when these things pop into my mind out of nowhere, I try to give them some thought, trying to figure out what the big HS is trying to say to me.
And so I did what anyone in 2016 does with questions in today's day and age--I googled it--like a boss.

Not surprisingly, one of the usual hymn authors, Charles Wesley wrote this hymn. But I did not know that he had it originally titled it "The Christian's Bugle Blast"---which I feel is much more hip and happenin'. He was a little before his time perhaps with this title.
So with the music added in, it turned into "Soldiers of Christ, Arise". A call to arms for Christians that he and his brother were held to some physical punishment in some places for this type of rally cry.

Then it gets published in "A Collection of Hymns for the Use of the People Called Methodists" (yep--for reals) with all 12 verses.
Later in the hymn, down into verses I have never heard, the words "adamant and gold" are used. This is said to be Wesley making reference to John Milton's poem, Paradise Gold where it says, “Satan, with vast and haughty strides advanced, Came towering, armed in adamant and gold.”. They think this suggests that Wesley intended for the hymn to be for Christians to use Satan's ways against him.
I like that--using Satan's ways against him.
So this got me thinking about all the verses I sang as a kid. So as I sang them through this morning and wrote them down, and this is where I knew the big HS was speaking to me.

Soldiers of Christ, arise,
And put your armor on,
Strong in the strength
Which God supplies
Through his beloved Son. 

You're getting nowhere good without Jesus. Main sentence, theme of the piece, forever and ever, amen, the end.

Strong in the Lord of Hosts,
And in his mighty pow’r,
Who in the strength of Jesus trusts
Is more than conqueror. 

 Exactly---I have to remember if I trust God, I am more than conquerors--we are over-comers in this life.

 Stand then in his great might,
With all his strength endued;
But take, to arm you for the fight,
The panoply of God. 
The panoply of God---I admit I looked this up. Amazing what you sing and have no clue what you're saying. Every definition is good but I really like "a complete or impressive collection of things". I have a panoply of  Prayer Warriors. I like it. I may start throwing it out into every day's conversation like my dad used to do with plethora.
                             

Leave no unguarded place,
No weakness of the soul;
Take ev’ry virtue, ev’ry grace,
And fortify the whole.
This one got me.  Boil it down to brass tacks. Well, you know what I mean.
This is where we are people. This is where the journey currently resides.
We have left no stone unturned, there is no room left for weakness in faith or soul. And God help me if it's not taking "every virtue" and "every ounce of grace" I have in my body to not throat punch someone daily. My mom from the time I was little, tried to call me a "young lady"---and I would get so mad and tell her I was NOT a lady. I'm sure because I was too fidgety to stand very long in line when God handed out grace.
In all seriousness, I  have all of you, my Prayer Warriors to help pray Carson and I through this journey. God is fortifying the whole lot of us.

Last verse. One day.

 That, having all things done,
And all your conflicts passed,
You may o’ercome through Christ alone,
And stand entire at last.


These verses I have never heard and am even more in love with.
To keep your armor bright,
Attend with constant care;
Still walking in your Captain’s sight,
And watching unto prayer. 

From strength to strength go on;
Wrestle and fight and pray;
Tread all the pow’rs of darkness down,
And win the well-fought day.

Just something to think about next time you sing it.

Light At The End of the Tunnel

Carson's arms are doing VERY well! His right arm is completely healed. And it is a sock on his arm--brace--another sock over the brace. Small set back on the left/original arm where someone changed the dressing and did not replace a bandage so it was an ACE bandage today that was stuck to the wound---not nice. He needed some pain pills and was shaky for most of the day but he was perking up when I left today.

The left now has bandage--sock--brace--sock. Hopefully before he leaves the hospital he will be in socks/braces only. And I have decided as a measure of comfort to him for anxiety, we will keep socks/braces for the move and while adjusting to a new facility.

I believe this will also protect him from any chance of re-injury.

But I am sure one day in the future he will move past this anxious and desire to keep his arms covered. I just have no real problem letting him have them as a security blanket for as long as he needs, to never go backwards.

This morning Carson's DHS worker called me on my way to the hospital. This is some encouraging news. I am finally letting myself be excited and hopeful.

New Mexico is pretty much off the table because their type of facility is for psych patients meeting short term goals---and I guess the OKHCA finally got something right--because he doesn't need short term. Carson needs long term goals and placement--in what is called a ICFID--Intermediate Care Facility for Intellectually Disabled.

So I am pleased NM is finally off the table!!! Thank you God!

The DHS worker said yesterday evening, her supervisor finally got ahold of the director for the San Antonio Autism Treatment Center the sister facility to the Dallas Autism Treatment Center.

(Which I will from here forward abbreviate SA ATC)

The Director for SA ATC, Dr. Z, said they have 7 houses there in SA, and 2 are especially for kids from out of state.

She has 2 spots open in the out of state house and 3 kids applying.

Dr. Z said it's hard to contract with them out of state but they do have some kids from Colorado, so it can be done. 

Dr. Z also said she would like to Facetime with Carson soon. I think this is a stellar idea! And a better way to get to know the real Carson that isn't on paper.

Maybe even as early as Monday.

The funding issue with SA ATC is probably going to involve educational dollars.

SO--here's what we're going to pray on Prayer Warriors:

1. Pray for Carson's arms to continue to heal & for his anxiety to lessen. Please God.

 I have struggled with the drs/psychiatrist horribly with that fight for weeks now.

2. Pray for San Antonio to work out. Please. Getting him INTO Texas is 90% of the battle I have fought for almost 3 yrs now.

 Pray for the funding to come through---however it needs to come through---educational dollars etc.

And pray they see him as the gloriously, smart, funny boy that he truly is. Pray they'll want to foster those qualities and help him continue to grow past any issues of communication and behavior, that he needs.

3. Pray for God-speed. We need things to work smoothly, quickly and for the greater good.

I am quite aware I will need to actually follow through and contact my Pit Bull Lawyer soon and perhaps plan a field trip to the state capital again. They are the only ones who can put the beat down on OKHCA. I am praying I have the energy for that if and when it comes.

4. Pray for all involved--we're all so tired--the Judge, the lawyers, the doctors, my  fantabulous nurses, the exceptional sitters, Ruby the Red  and especially for Carson's DHS worker. I told her today I could hear the exhaustion in her voice. I could be wrong but she sounded a little like emotions were maybe brimming in her eyes.

I knew what she felt and how frustrating it was. I know how it feels like you're purposefully putting your head through a wall each day. And the stupid hamster wheel that is OKHCA--riding that daily is a nauseating trip. I told her today that she was doing what I did by myself for 3 yrs. And I told her I had people that would pray her through this last little bit. She is doing the bulk of this fight.

A couple of friends pointed out to me this week-- something I just couldn't see---I've come a long way. I can't see it because I'm so close & my head is looking down  really concentrating on putting one foot in front of the other. In my eyes if I haven't gotten him into TX, I'm not there. I'm not at my goal to see him happy.

Anything else is failure. But I am starting to see what they're saying. I guess it's been so long I've truly forgotten how far of a road I've walked down in all this.

The DHS Worker is tired. I recognize the sound of it well.

Please help me lift her up in prayer. I know with God's help we can keep her going.

Handicap Or To Handicap: We All Have One (Or Two Or Three)

(This is a lesson I taught in my home congregation ladies class at the beginning of the year, so it is written as such. I had people ask me to post it in written form.)

The definition of a handicap is:
a) a circumstance that makes progress or success difficult
b) to act as an impediment to 

These are very different--one works at keeping you from things, and the other, YOU, are the thing impeding someone or something else.

I will say now, I do not have all the answers to every question I'll ask, rhetorical or otherwise. But I think that's healthy for us. And humbling.
God doesn't bestow all knowledge on us because our human egos would be quick to succumb to bloat.

With most physical or mental impairments people ask, "why?"
As I mentioned previously speaking on Doubt---questioning is okay.
In my opinion, it's a healthy part of our God given free will. And even God's son took time to pray to his Father to ask for clarification in the garden before he went to the cross.

As a realist, my mind doesn't hover over the why. I don't care. Maybe that's shocking, but I don't.
I have absolutely no problem caring with you over your "why"; but I don't really care about my "why".
 For me what matters is what I'm supposed to do with it. I'm a pleaser, a doer and I want to just jump to the part where we find solutions or accommodating resources.

Examples were given throughout the Bible on handicaps. Anywhere from the skin conditions of Naaman, Jonathan's lame legged son, Moses--did the most humble man have speech issues or was he an introvert?  The handicap of who you're matched up against, like David. And I don't want to forget my spiritual mentor, Job, who has too many impediments to name.
Then all the way to the New Testament where Paul speaks in 2 Corinthians 12:7 of his "thorn".

2Cor 12:7--" or because of these surpassingly great revelations. Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me."

Of course none of us know what his thorn was specifically but there's quite a bit of evidence pointing to Paul's thorn being lingering blindness or eye issues after his road to Damascus encounter. 
In Galatians 4:15 where he says he knows the Galatians would have torn out their own eyes and given them to him. 
Galatians 6: 11 Paul talks of writing in his own handwriting to them, but with large letters and writing.
Paul pleads with God three separate times  to remove this thorn, but God instead used His power & grace through Paul's weakness.
(I personally think Paul struggled with other "thorns" like maybe nightmares & guilt over the persecution he participated in. Humans do struggle with guilt & letting go of our sins and the sins of others that have touched our lives.) 

I think we're lucky at this congregation to get to see such huge God moments or displays of power, and control and His ability to overcome anything.
We are lucky to be constantly shown through Gavin, Gage, Coleman and Carson.
But through each of these children's unique lives, we are able to really see God's power at work in some impossible circumstances.

Remember I said Job was one of my spiritual mentors. He looses his money, livelihood, even his children and was afflicted with boils from Satan.
Satan claimed that good people like Job love God only because of the good things He provides.
Remove these and his faith would melt away.
Chapter one tells us Job has done nothing to deserve this.
Sooner or later we find ourselves in Job's type situations where our world seems to crumble, and nothing makes sense--our faith is put on trial.
For me, I see him as the example of anyone going through suffering, to hold steadfast to your faith.

James 1:1-4 "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything."

Another interesting, human part of Job's story is when God gets upset with Job's friends as they try to talk him through the things handicapping his life. 
Lesson #1 in NOT being like Job's friends:

HEAR THAT.
Do you know what I personally want to do when I feel frustrated and feel like I got shoved down to the bottom rung of the ladder of life??
I want to throw a good, old-fashioned hissy fit at how hard it will be.
I want to lie in the floor kicking and screaming and say not nice words.
You don't know what it feels like to live my life, so don't think you know how I should feel about this development! Maybe instead, you should ask the person,"How do you feel about this newest information?"

For example--a friend's child gets into Harvard.
Terrific! What fantastic news! It surely is. Their child is smart. Their child did something impressive. Here's what we as friends say, "You have to be SO happy to hear that!"
Umm no I don't.
I can be exasperated, sad and frustrated or want to lie down in the floor and throw a ring-tail hissy. Trust me, there will be a few other emotions for a mother to process before she gets to elation.

 Give her time. She's thinking, "My child is going far away from me, won't come home but a few times a year & this will change our dynamic, our relationship and our lives forever."
 Is it the worst news--no. As a mother does this bring forth a plethora of emotions on many different levels-- yes. Have you had this exact human experience?  So let them process it all in however long it takes them.
Please don't be like that child that sticks their hand under the door while you're in the bathroom, asking if you're done yet, fifty times.
Encourage when they reach out. Everyone needs that--but you can usually sense the tone of someone's emotions. If you aren't one of those people who can--watch the people you know can. I'm dead serious. Just like Job's "handicapping" friends, you could be right or wrong, but that's not what we always wanna hear even when we know it's the truth.

This brings up the other handicap definition--"Are you acting as a handicap..."
--in a situation with someone dealing with physical or mental hurdles in their life.
--in a situation where we feel we know best---for example, raising kids.
---in a situation where someone has wronged us and we're using that to keep us from continuing to work for the greater good
If you are--then you are allowing a seed Satan has sown, to handicap you from furthering God's kingdom.  

Handicaps come with sacrifices.
SO:
*Where's the justice?
*How did this happen or how did I get here?
*Why???
*I thought God wouldn't give me more than I can handle?
*Who did this to me--God or Satan?
*This isn't fair!!
*Why do bad things happen to good people?

Remember I told you I don't claim to have answers. All I can tell you is what I believe--which is--
IT DOESN'T MATTER!!!!
What matters is we are given these trials & then we show God we trust Him to know more than us by staying steadfast in our faith.
We show the world we trust Him to navigate us through life.
Even in seasons of disappointments and trials, God is there with us. Even if He's silent like he was with Job. Yes silent.
Our imperfections are a reminder we need to rely on God and each other.
We need to try and be open to helping those who we see sacrificing for their handicaps. It may not be easy or in the way we want to assist, but we aren't called to "easy helping" just because we're Christians.

Hebrews 12:7-12
"Endure hardship as discipline; God is treating you as his children. For what children are not disciplined by their father?  If you are not disciplined—and everyone undergoes discipline—then you are not legitimate, not true sons and daughters at all.  Moreover, we have all had human fathers who disciplined us and we respected them for it. How much more should we submit to the Father of spirits and live! They disciplined us for a little while as they thought best; but God disciplines us for our good, in order that we may share in his holiness.  No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.
Therefore, strengthen your feeble arms and weak knees."

Whiplash

As I sit here in one of Carson's sweatshirt all cozy, I can't help but feel energized. Exhausting as these type of meetings are, I always find I am either 100% wrung out or I am 100% ready to take on ten bad guys with a really loud Miss Piggy "Hiiiiiigh OFF!" karate chop. (That's what I called it when I was little. I honestly don't know the real term.)

I learned shortly before I left the hospital for my meeting, that Dr. G from Dallas Autism Treatment Center, had called Ruby the Red and told her the admissions committee meets this week and we should have an answer Thursday or Friday. A yes or no answer on whether he meets criteria. A yes or no answer on whether they will come look at him. I am sooooooo nervous I can't even equate it to anything funny.

Today's meeting, well, it was supposed to be more. It was supposed to have a few more people but it ended up being small and my bright purple power blazer I wore was lost, except on the two TWIN Korean Veterans who were sitting at a stop light next to me--flirting.

I can hope you keep up with this hamster wheel of a two hour meeting.

Disclaimer: If this reads in parts like I've been drinking, just know that's how it was presented to me as well. It isn't a typo and I am not responsible for any whiplash that ensues. Just wait for the cherry on top.

My understanding on part of the low numbers at the meeting today was the state agency DDSD in charge of placement, couldn't make it to the meeting all the sudden when they found out I was coming. Am I that scary? Don't answer that.

So DHS Worker was there & her Supervisor (who was with us at court) and their student who is in school and doing a report with Carson's case.

On our conference call side was included Child Welfare (CW)  & Oklahoma Health Care Authority (OKHCA). Some of their people couldn't make it either. These are usually large meetings.

They (CW) first wanted to touch on Son#2 returning home and if that was possible. They talked of getting him evaluated to see just what all he'd need in the home but of course, no one during school hours or to accompany him to school. And no one at night when his sleep is all erratic.

"DDSD won't do 24 hour care."

So this is where I jumped in for the first time in the meeting and went off on a five minute monologue on why Carson cannot live at home & how that's not fun for me, but this isn't about what's best for me, it's about what's best for him. How coming home from Rose Rock I restructured the entire family and it's schedule, walked him five miles a day, found a special needs after school daycare, chain and padlock on my fridge, key entry to all bathrooms--It still wasn't enough. I am at the hospital 115 days now. We have round the clock care and nurses etc. I'm still not enough. I never will be.

I also did my speech on how no one gives birth to a child and thinks at 11 yrs old they will leave home, never to live with you again. Think about sending your kid to college and multiply it by 100--and oh yeah, he can't talk.

 Long pause. 

CW: "That was well articulated." 

Me: (silence)

CW: "What about sending him so far away? Like Texas.

OKHCA: "We don't contract to send kids out of state."

Me: "Well then you might explain that to the ten kids in Texas that just had their funding yanked in June."

OKHCA: "Well if they do go out of state, they don't stay past 18 yrs old."

Me: "Well, I'm pretty sure at least one of those kids is 21 yrs old. And isn't the state federally mandated to provide any special needs child an education until their 22nd birthday?"

OKHCA: "Umm well it's really about the mechanism of payment  for out of state. Maybe if he was in your custody we could do a work around & cover the treatment with our insurance."

(Tricksies-If I take him out of the special needs petition I'm not stupid---you don't have to do jack anymore.)

OKHCA: "There's no new group homes in Oklahoma geared toward autism."

(Much rolling of the eyes by those of us in the room---DUH! We know that!)

"Tahlequah wasn't a high enough level of care."

(YA THINK!? I said that way before he got there! Tahlequah said that WAY before he got there!)

CW: "Unfortunately DDSD can't pick him up to place him anywhere because it's an adult program."

(Is that why there's an 8 yr waiting period for their services?)

"All they would have is an "agency companion home". In therapeutic foster care..."

At this point DHS Super interupts and says, "We have checked with foster care and put out feelers asking for specific home type & care givers---Foster Care is unable to staff him. It will not happen. There is no foster care home. His needs are too great."

DHS Worker: "Plus if a home environment worked, he would be with his mother!"

CW: "Well then why is the hospital environment working?"

Me: "I think that's due to 24 hr staffing and everyone there getting breaks in shifts, he trusts these people and realizes they mean him no harm & his sensory overload is contained for the most part--which it is not in a true home environment.

CW: " Won't he grow out of some stuff?"

(I'm sorry what's that? Grow out of autism?)

Me: "In the RIGHT environment that is suited to kids like Carson that are more severe 1-2% of the autism population, and a place that has dealt with kids like Carson--he might LEARN to adapt his communication techniques or modify certain behaviors. Maybe even potty train. But I don't see that being done in Oklahoma. What I see in Oklahoma are places that can barely meet his daily hygiene needs and sometimes not even that."

Then the biggest Lightbulb Whammy of all...

OKHCA: "The crux of this is that the state of OK is on a list of only a few states in the entire country that does not have autism legislation on the books for insurance. There is no criteria for severe autism in our mental health legislation for insurance. It isn't covered. 

We don't want to put him somewhere that in 364 days he will be yanked out & everyone will be upset because funding has run out in whatever mental health category we are billing under."

So the few that have the power---OKHCA & Child Welfare--are seeing this as a big, huge picture in their policy textbooks from their desk. And I see it as we have to walk before we can run. 

 You'd think that'd be the end right? Noooooo! But wait! There's more!

CW: "What about Rose Rock? Will Rose Rock take him back?"

We all just about jumped out of our seats! 

DHS Super:" Umm no they absolutely will not take Carson back."

CW: "Why not?"

( I snorted. For real. Out loud.)

DHS Super: "There was an investigation after he left. It wasn't good. And Judge would say NO."

CW: "Oh."

(I reported them for abuse & neglect 3 times the last three months he was there. I don't think they want me or Carson anywhere near them. The feeling is mutual.)

OKHCA: "What we will probably do is severeness and then when he outgrows that, we can move him to another facility that is for less severe kids or adults back here."

See this is why Dallas is good at what it does, it doesn't move those kids every 6 months to somewhere different. 25 years of taking kids and keeping them till they care to leave or are retirement age. That's what these kids/adults need most--STABILITY! 

DHS Worker: "New Mexico is already agreed to take Carson & agreed to contract with us. But there is a 4-6 wk waiting list."

OKHCA: "Okay but when he is 18 yrs old he will have to return to OK and apply for adult disability."

Me: "What?! That's starting over in the line for all his benefits! With the special needs petition he was bumped to the top of the DDSD services list---but now he'll start over at 18 yrs old?"

OKHCA: "Well there was a kid once we sent to New Mexico and after he turned 18yrs old they applied for him to be a resident of NM and he stayed at the facility."

(SO SEE?! That CAN be done in Texas too! You've set a precedent you dum-dums!!!)

Do you have whiplash yet??!?!?! 

So--we ended with 

CW: "Well, I guess I don't have any answers."

Me: "I have yet to meet a person who's had ANY answers.

So, we will all be patient and wait to hear what DATC says Thurs/Fri. and go from there. Check on some school funding access for DATC or other facilities.

Nothing is settled but I do see the narrow boxes these people are working from. If I could get them to spend 30 mins at the hospital--I know I could get them out of their little pea brained way of thinking.

They think if someone isn't meeting policy criteria from a manual, they will keep running into the wall trying to make them fit rather than make a new door to go through.

I feel sorry for them really. So many people working with Carson have been touched by his journey, these people are sheep waiting to fall off the cliff. But if I've brought around DHS and that group---I know I can shepherd a few more into the Carson fold.

Oh the cherry on top I promised....

After our phone call ended, DHS Super & DHS Worker told me the Judge told them that if we find a place--she will help push funding. Ummm yes please!

They also told me the investigation into Tahlequah is done & turned in.

Apparently there were lots of  concerns or findings. "Results were an extensive list, like over ten issues." 

There was no hospital record in Tahlequah of him being brought there to the ER three times as told to me/DHS.

The nurse for the group home said, "Why wouldn't they have called me about his arm?"

And apparently Tahequah had led DHS/Super to believe Carson was not alone in the ambulance. Otherwise, DHS Super assured me, one of them would have come to the hospital themselves.

(DHS is officially off my poop list)

Oh and the real cherry...I guess word is getting around about Carson...some legislators at the state capital pushed for this meeting today & "they know Carson's name".

( I wish you could see my poop eating grin right now. It's HUGE.)

So I am planning a trip back to the capital real soon.  I'm ready to show them some gross pictures, twist some arms, get some money, and rewrite some legislation! 

CARSON'S LAW!!!!!!!!!!!

Club Med

Yesterday was a bad day. It was not pretty and I was one of those Target bags blowing around in a parking lot waiting for someone to pick me up and shove me in the recycle bin.

Today is already much better and my hair is still piled on top of my head in a wet bun so don't cry for me Argentina. It's all good.

But I'm giving you these not so flattering details to let you know it ain't all unicorns and rainbows with moms of chronic ANYTHING kids. 

 

There's a few moms I am privileged to have in my life. They are moms with kids with chronic medical issues. There are four of us. While you may say I do not fit in this category, I will define my role. I have a kid who's disability is so severe that he could allow harm to come to himself or me, one day, and not realize the consequences. There is a definite fatality rate involved with my autism.

Carson also has issues I know these other mother's struggle with--side effects of meds. The very meds that are supposed to help your child, can cause side effects that come with their own bag of tricks and hazards. That would be the reason we do the EKG's. He takes harsh meds,that have over time caused  issues and will continue to stress his heart. He has banged his head so much, his doctor has worried about frontal brain issues. Worry is worry and stress is stress---we all share that in common about our children. My newest hurdle of being in the hospital has probably cemented my spot in Club Med. 

Now there are four of us here at Club Med. We have another child who is non-verbal with varying serious health issues, and two that have had many major organ surgeries and are the bravest of the brave. 

While we do not talk on a daily basis, we are not each others BFF's, we share a lot of the same feelings. We can rant and rave at each other, encourage each other or just simply like each other's Facebook posts and we know. 

 

We know that we know, we know. 

Club Med isn't about who has it worse at the moment, who is actually getting time with their other kids or really about THE kid---it's about feelings. Not many people can give the validation of , "I know how you feel", and really know. But we know. No one may ever know what it feels like to walk in your shoes, but these women have tried mine on and walked around the block. That is something I thank God for. Ours is a very different club or friendship. We don't keep in constant touch. It's just the knowing that makes you sometimes feel better. It's those prayers you say for one another that you know they say right back for you and your child.  I pray on those bad days we have, that I have enough bail money if the call comes one of us has snapped. I love these women in Club Med. I pray good things for them and long lived health for our children. We can laugh till we cry, we can cry till we laugh. And we can probably tell more poop stories than a 12 yr old boy.

 

 

I've been in a funk since my Dallas trip. Usually I'm a pretty private person with my feelings but I think there might be some small pearls of wisdom in sharing them this time. If nothing else than to explain my dazed look and zombie like state as you see me wondering around town with my ten second delay to answer your questions.

Let me try to explain. **I will preface this analogy with the fact that I do not ride any rides at amusement parks. I am not a roller coaster person, I do not like heights and I do not glean joy from going in circles.**

 Imagine getting off a merry-go-round after 100+days of being on that spinning wheel (of death) and then trying to jump back on. Your equilibrium is off, you stagger around, you want to vomit and you feel like your sense of timing is WAY off. 

 

That's how I've felt since returning from Texas. I can't make myself have the same energy to go back to the hospital and work tirelessly making phone calls etc for Carson.  Take it easy, relax you say--

That would be nice, why don't I do that?

I can't seem to knit one complete row, read more than one page in a book or concentrate on anything more than 4 minutes long. I have no idea what I'm saying when I speak, I zone out after 4 minutes of someone else talking and I want to do anything fun and distracting to get my mind away from the guilt I feel for not being with one of my kids every minute or doing something for them. 

I want to wander aimlessly in a store (which I haven't really done in all these months) but that's tremendous sensory overload--I would go postal and end up wearing a tu-tu home I didn't pay for. I feel like I was captured by some alien and probed in the melon and sent back to earth to wander around and spout gibberish. (Maybe I'll run for President.)

Club Med moms know this feeling well. I don't even have to ask--they'd just laugh.
But for me it was new. Bonus prize to the hospital stint I imagine.
Just as I was thinking --thank you Jesus this day is over--God sent me a cement block.
I'd really been shaken to the core the past few days when someone close to me told me they didn't think God was down here working in Carson's life or anyone else. Just an opinion. I don't want to argue it or think about it one more minute.
But God's cement block landed in my lap last night with a thud in the form of a text from a friend I don't hardly ever hear from.
I feel it's only fair to share her words since you have all put in the prayer time for Carson & myself:

 

"I teach at a college in NE Oklahoma. We had a dept meeting last week with the president of the college. It was mostly about the decrease in funding for OK schools, but during the meeting he was mentioning how he was upset with the state of the current OK gov. He specifically mentioned the poor treatment of mental health care patients and the abuse of children in the system. I thought you might want to know that all your hard work fighting the system is working to get the word out, even in other areas of the state.

 

I didn't say anything in the meeting, but I smiled! My Wed night ladies prayer class has been praying, particularly for the Dallas trip. I shared your blog post with the class. I loved seeing how God had been leading you up to that moment for a long time!

He definitely works! Just imagine that if one thing went different in any of your lives (lawyer, lady in Dallas, you), then you would not have had that connection or that meeting for that matter! God plans things WAY in advance and orchestrates each and every one into this beautiful chorus of interacting lives!"