Thursday, August 07, 2014

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.

Thursday, February 13, 2014

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.

Monday, October 14, 2013

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.

Tuesday, July 30, 2013

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.




 

Friday, August 31, 2012

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.

Tuesday, August 21, 2012

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

Wednesday, August 15, 2012

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.