On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Sunday, May 29, 2011

How do you miss someone that never existed?

Still chilling at my MIL's house.  I return to reality tomorrow, not that I should. I'm still so emotionally overwrought and the quiet here is very therapeutic.  Wednesday's DBHDD audit of Sissy's case at the hospital was a nightmare. It's a marvel that I had any fight left in me because I felt so drained and deflated before I went.  You can imagine how I feel now.  And I wonder, why do I keep fighting for this child? The answer is I love her and by God, SOMEONE has to advocate for her!

Thankfully the kids' grandma came with me and I'm not kidding, she left that meeting more agitated than I did. To quote her, "24 years and NOTHING has changed." She was referring to the fact that Sissy is at the same RTC her birthmom was at when she was Sissy's age. Hats off to her for reliving this nightmare with me, I don't miss the point that it's Round 2 of this nonsense for her.

It's just so hard to ignore glaring lies and ignorance coming straight from the mouths of the agencies that the state has in place to "help". So frustrating.

No, that's being kind. It's sheer madness. All of it is.

I've made so many calls, talked to so many people, and still I hit a brick wall. If I was a ram, I'd have brain damage.

The bottom line is there simply are no state run facility that provide long term care for youths and adolescents. And private facilities are typically not PRTF licensed so even private insurance won't always pay (not that we have any). In other words, it's self pay or keep the child in your home, boomeranging in and out of RTCs all through adolescence. And if they get in trouble with the law because of their mental health issues, juvenile detention centers or jail.

Ultimately, the system is a set up for failure. I was literally told that if Sissy was 18, this would be a non-issue and that if we didn't think we could handle her that we needed to consider relinquishing our rights.

I also learned that there are 13 states in the union that have made it illegal for the state to force parents to relinquish custody. We don't live in one of those states. We live in a state that will make us out as criminals if we feel we are forced to choose the welfare of the other children in our home over Sissy's. But of course, we're in double jeopardy because if she harms one of the other children we could be charged with failure to protect.

The thought has crossed my mind to move to another state. In a recent text message, I said, "the mental health in this state has reduced me to a one word vocabulary that begins with the letter 'f' and rhymes with duck."

But then even if we become independently wealthy and could pay out of pocket for private care... eventually we'd be broke.

And then I hear stories about wealthy families that don't pay a dime and their children are in state care because they could afford lawyers to convince the state to pay. I can't afford a lawyer.

And the state tells me it's a civil action lawsuit to do a case-by-case consideration to pay for a lateral move for Sissy to go to a long-term PRTF facility in another state.

There is no win.

And I want to scream.

I keep telling myself if Sissy could just be good ... if she could just be the inner child I know that's in her somewhere, beneath all her issues ...

It comes down to this truth: I miss a child that never existed.

Tuesday, May 24, 2011

Where are you?

photo from Country Goose B&B  in Rhode Island
The kids' last day of school was last Thursday. Friday was the dress rehearsal for WG's dance recital day and AB-pukes-his-brains-out day.  Saturday was the recital and The Dad's birthday. Sunday was pretend-church-doesn't-exist day and put-a-window-AC-unit-in-the-kitchen-window day, which, as it turned out, was easier said than done.

Monday was follow-the-therapist's-advice-day so I drove to my MIL's in the country where I intend to stay until next Monday. I need to clear my head, I need to stop hurting, I need to feel free and I need to be allowed to feel free.

Tuesday was drive-to-the-beach day and accidentally-get-a-sunburn-while-floating-in-the-surf day. It was also AB-and-WG-love-hate-each-other day and eat-way-too-much-mcdonald's-day and see-lots-of-dead-jellyfish day.

Wednesday is go-to-the-hospital-for-an-audit-of-Sissy's-case day and do-another-pointless-therapy-session-with-Sissy day and hopefully not learn-that-sissy-will-be-discharged-in-two-weeks day because that would mess up

Thursday which is quilt-like-a-mad-woman-while-pretending-my-heart-isn't-breaking day and teach-WG-how-to-ride-without-training-wheels day.

better living through modern chemistry? sure, that's true except modern chemistry only fixes the symptoms, not the root problem. My root problem? I'll siphon it for you verbatim from the movie Proof:

How many days have I lost? How can I get back to the place where I started? I’m outside a house trying to find my way in but it’s locked and the blinds are down and I’ve lost the key and I can’t remember what the rooms look like and where I put anything. And if I dare go inside I wonder, will I ever be able to find my way out?

If I go back to the beginning I cold start it over again, I could go line by line, try to find a shorter way, I could try to make it… better.

At a dollar store on my road trip to my MIL's on Monday, the children needed to use the restroom and wanted a snack. As I waited patiently for them to take turns using the facilities, I read the employee notices pinned to the bulletin board in the hallway. "Your doing a great job, team!" was handwritten in pink highlighter on a spreadsheet showing the previous month's sales numbers. I opened my purse and got out a red crayon, the closest I had toa pink highlighter, and added an apostrophe between the 'u' and the 'r' and tacked on an 'e' at the end.

How does one become a general manager of a Dollar Store if s/he doesn't know the difference between your and you're, I wondered? How does one with a colossal brain and proclivity for science and mathematics, potential to become and do amazing things in her lifetime become the low-income adoptive mother of special needs children including an 11 year old that requires repeat psychiatric hospitalization for suicidal ideation and self-harming behaviors?

Thankfully AB exited the restroom before I was forced to answer my rhetorical question, a painful truth for which I have not the strength to face, modern chemistry notwithstanding.

Wednesday, May 18, 2011

Suffering ... a year revisited

Yesterday's post was funny and light.  It covers the truth that I'm breaking apart and have sobbed through the last 48 hours.  It really wasn't a good visit with Sissy.  We have come to the point in the road with our dear daughter in which we are forced to make some harrowing decisions.  And in our state, those decisions could cost us unmitigated pain and loss.  My gorgeous Orlando RADilicious mommies are privy to our current reality and for now, it will stay that way.

Instead, I thought I would revisit a post I wrote a year ago about suffering. Because even though I'd like to imagine that I'm the only RADilicious mom that is hurting, I'm not. Since our respite in March, many of the beautiful women I met have continued to endure such suffering and pain in their journeys to rescue, support and raise their RADish gardens. This post, is for those giants in the Kingdom of Christ, Humanity and this Earth. There are no stronger women that you will find and should you be blessed to be called friend by just one of them, you are the luckiest person alive.

Suffering: dedicated to RAD moms everywhere

Tuesday, May 17, 2011

Dear State

Because the road trip to see Sissy is long, long, long long long. Long for so many damn reasons, long. Thus The Dad and I had to find ways to amuse ourselves. And places to pee. (and now he's going to throw something at me because I just discussed our bodily functions in a public venue. Oh yeah, and Dear? I have about 200+ people reading daily, just fyi. xxoo love you.)

I'm SO going to pay for that

Unfortunately, the road trip from our home town to the city where Sissy's hospital is has nothing in between. Let me restate. The interstate has zero, zip, zilch, nada, not one single solitary worthwhile place to stop for 140 miles of pine tree mind numbing hell. Oh sure, you can stop at a gas station in which you have to ask the gas attendant that is from another country (usually near, in or next to India) for the key to use the whole-in-the-wall toilet out back. Or you can stop in some nasty 85% health code rated fast food joint that MIGHT have toilet paper on a roll in the stall (but those can be fun because if you watch long enough, some poor sap will inevitably come traipsing out of there with some toilet paper stuck to the bottom of their shoe unbeknownst to them.)Or you can stop at the one and only rest stop in between. OK. that was a lie. There is one other rest stop. It's about ten miles from home. So usually there's no need for that one, coming ... or going. (pun intended).

I've made this trip so many times that I've written down which exits have reasonable toilet and or food accommodations. The list is short. Exits 130 and 114 are safe. State Rest Area 53 at mile marker 109, also safe. (I should point out that the rest area closest to home has been raided several times for homosexual solicitation so even if I really had to pee that badly and couldn't wait the ten miles to home, I'd probably pee myself first.)

Today, I was driving. The Dad's arm is still not healed and to add insult to injury, he got a nasty case of bronchitis. I needed him to come with me, no way in hell was I making the trip to see Sissy alone and so that required that I anted up and drove... round trip. Thus, a travel mug full of coffee, we headed out of town at 9 am sharp and began the monotonous journey to Sissy's hospital. (seriously, if ever there was a time I wished that I was smart enough to engineer a tractor beam that could beam humans from one destination to another, this road trip would be it. I would gladly walk 500 miles(shameless plug for corey's fundraiser) than drive this 140 mile trek.) and yes, I did indeed put a parenthetical comment inside a parenthetical comment. sue me. it's been a sh!tty day.

Knowing that I had toilet options at mile markers 130 and 114, I gauged my kidney's progress for filtering the coffee I was guzzling. Except The Dad and I started gabbing so when I said, "I'm stopping at 114 to pee" The Dad said, "uh, we just drove past it."

Damn. Damn Damn. (quoting Doc from Back to the Future)

"Oh, right. Rest area mile 109. no big deal. I can make it."

(yes, really, this is how bad the drive is. I really, truly have to know where and when to stop. NOT making that up and NOT suffering from a severe case of OCD.)

So we make it to the rest area.

It was overgrown.

Let me restate. The weeds were two feet high. And since it was overcast and rainy today, the affect was ... spooky. But hey, clean toilets that flush themselves, toilet paper, soap, sinks and hand dryers and no loitering, unkempt, strange, waif-like men trying to pick up my husband, what more can a girl ask for? OK. So I was asking for some mowed grass. It was a bit kitschy. Plus, hello? In our state, tall grass is an invite for some scary critters of the poisonous, legless persuasion. Thus began our banter and some hilarious road trip commentary. The following is the result (and hats off to The Dad because this is a collaborative blog effort. Yes. We discussed the fact that this was blog worthy. yes. We're THAT kind of people. So sue us. Really, we don't care. It was a sh!tty day.)

Dear State,

Today we had the occasion to use Rest Area 53 on the Interstate. It was severely overgrown. We respectfully request that you send a crew out to cut back the grass.

Mr. and Mrs. Taxpayer

Dear Mr. and Mrs. Taxpayer,

We have received your letter and acknowledge your concern for the appearance of Rest Area 53.

We have also investigated your taxpayer situation and would like to point out that the state is currently footing the bill for your child's psychiatric hospitalization. It is costing the OTHER tax payers in our state a great deal. So much so that we've had to cut the budget in other areas, in particular, the grooming and maintenance of Rest Area 53.

The state respectfully requests that you return the favor by doing a civil service and mowing the grass yourselves.

Best Regards,
The State

Dear State,

While we accept and gratefully thank the state's assistance in providing hospitalization care for our federally deemed medically disabled child and agree that we could do our civic duty to make restitution to the state, we have a counter offer.

Have you considered the amount of money it would save in the mental health budget if you had the residents of hospitals grooming and maintaining Rest Area 53? It could be billed as "recreational therapy."

Mr. and Mrs. Taxpayer

Dear Mr. and Mrs. Taxpayer,

We have further reviewed and scrutinized your family's individual case. We are gravely concerned about your idea of putting sharp, cutting tools in the hands of patients with self-harming and threatening behaviors! Not to mention that many patients are a flight risk.

The State

Dear State,

We're sorry for the alarm, we did not mean to cause a ruckus. Of course we would never expect you to give them implements of destruction. Have you considered the potential for time and money saved that several thousand fists of angry residents yanking up grass and weeds could have on the state budget?

We would be glad to cite several psychiatric references to the benefits of outdoor time for the psyche. Our children's therapists at the state hospital swear by it.

Furthermore, Where will they run too? Have you BEEN to Rest Area 53? There is NOTHING there. Nothing but overgrown grass, toilets and some vending machines behind bars that only a toddler's hand can fit through to reach the snacks one pays for.

Mr. and Mrs. Taxpayer

Dear Mr. and Mrs. Taxpayer,
The state has decided that your child has made a miraculous recovery and will be discharged from the hospital immediately. We are so happy to tell you this news first hand. It has cost the state a great deal.

Best Wishes,
The State

Dear State,
We have found that it is in the best interests of our family and our daughter's mental health to move to the desert of Nevada where there is no grass and if our daughter is a flight risk, it won't matter because we'll still be able to see her even if she's 10 miles away.

We regret that you will no longer be getting our tax dollars from our income, our small business or our purchases.

By the way, Rest Area 53 still looks like shit.

Taxpayers of Nevada

Monday, May 16, 2011


I don't know how else to explain it. Clearly I'm not suffering from low iron in my blood or a decreased inability to absorb oxygen in my red blood cells.  I haven't lost a lot of blood lately and as far as I can tell, I haven't been attacked by any vampires or zombies lately.  So physiologically?  Not anemic.

Emotionally?  Oh yeah.

The beginning of The Wizard of Oz when it's all black and white and it's hard on the eyes to watch and you're dying to know what color Dorothy's dress is or just how colorful the traveling magician's wagon is or how rosy Auntie Em's cheeks are but you can't. You can only imagine it because it's drained of color and by default, life.

Then blammo, the house lands on the wicked witch and you've got technicolor-pop-your-eyes-out-of-your-head-it's-so-dang-beautiful color.

Now before you go reading between the lines and supposing that I imagine Sissy is a wicked witch that I want to drop a house on, just pause with me a moment and capture that cinematic vision, as if you're seeing it for the first time. Travel back to your childhood, lying on the living room floor watching it on a Sunday night with your family, eating popcorn, eyes glued to an enormous cathode ray tube inside a decorative cabinet shell. It's black and white, you're bored, your parents keep telling you it will get better, they promise it will. The nasty lady takes Toto, the tornado comes, she's peddling by the window of Dorothy's room, flying through the air, morphing into that horrible witch and then ....

... the chaos instantly stops. Dead. And it's quiet. And a bewildered Dorothy finds her way out of the tossed up house into a world of life, beauty and color. The wicked witch is really dead, she's really, most sincerely dead and Dorothy just wants to find her way back home.

Life with a severely mentally ill child is anemic: it's a black and gray world devoid of life, filled with chaos. It's traumatic, violent, scary and isn't really living at all. It's as though your blood can't flow to every part of your body so the nonessential parts begin to die or get cut off. Technically, you're alive but you're not living a vivacious life, you're merely eeking out an existence.

Then the ill child is removed and it's like getting an infusion of fresh blood that flows through brand new veins. You feel full, free, light, bright, healthy. You can breathe deeply and not worry. You can rest. You find help from friends along the way that you didn't know where there. Even cowardly lions and brainless scarecrows are welcome companions. There's singing, dancing, ruby shoes, a plucky dog and a yellow brick road of promise.

Because ultimately, all you really want to do is return home ... to a life that doesn't exist. A life that includes your ill child made whole.

Today we travel to the hospital to see Sissy. I'm a ball of nerves. I can't decide if I should cry, laugh, scream, run away, hide or be brave. I have lots of "have to's", "should's" and "need to's" running through my veins. It's making me anemic again. The technicolor world is fading away, the yellow brick road is winding through a dark forest and the wicked flying monkeys are circling overhead, threatening to kidnap me to the castle of another witch all because I'm wearing some pretty ruby shoes that will ultimately lead me home.

Do you want to live a life that embodies the service the Christ begs of us? This is it folks. THIS is it. It's anemic and only a transfusion from the blood of Christ will bring life back to the weariness of this broken world filled with broken, lost souls.

Sunday, May 15, 2011

triathalon photos!

The bike in position, the second stage of the triathalon. AFO's hanging in a bag, 
waiting to be put on after swimming

waiting for the third heat - 50 yard swim, 1/2 mile bike, 1/4 mile run
Time to get in the pool!
WG making the best of it - she was bored
"Swimmers on my mark!"
AB cutting through the water in free style
"ok son, now swim back!"
"you made it! great job!"
On the adaptive bike, his volunteer helper by his side the whole way
fortunately the orthotic group was there so they put on his AFO's for me!
(So nice to get help from a person that doesn't have to be shown how!!!)
Making the turn and good time
Cruising along
Getting ready for the last leg - running
His medal at the finish line
Enjoying a snack and a water after it was all finished

His swim time was1:10, his bike time was 6:57 and his run time was 2:57.  The hardest part was waiting for all the other athletes to finish so he could participate in the award ceremony. AB doesn't do waiting.  Also, it was hard because the volunteers kept asking if he was OK because he's so stoic at these types of outings and he comes across as having selective mutism.  I had to keep saying, "that's just how AB is.  He's actually happy and proud of himself.  This IS AB being  excited."  Of course, the instant we were in the  van and the doors were closed, he was all gab. *roll eyes* I wanted to drive  past the remaining volunteers and athletes with the windows rolled down so they could hear him! lol

All in all, an awesome event and another first for our community.  There were over 50 athletes of all ages and all levels of ability.  So much fun and so nice to be with only families of impaired youths and adolescents because they get it. They just know.  Outside of reassuring everyone that AB was fine despite his flat affect, the rest of the conversations revolved around devices, services, insurance, respite, therapies, techniques, tutorial services, compressions, IEPs, you know, "normal" conversation.

Saturday, May 14, 2011

Quilting the Blues

Sitemeter is telling me my readership is dropping. Well, when you don't have scary stuff to talk about because your RADling is safely tucked away in a hospital and when you're busy living life without the chaos and drama of said RADling, then there isn't much to talk about.

Except there is.

In November, after months of grinding my teeth while I slept because of the fear that Sissy would hurt me (even with the alarm set) and because it was just that traumatic and violent all day long, I lost a filling. And because we're living on the edge of U.S. poverty level without insurance, I had to pay down my credit card that is used specifically for medical expenses. And since Sissy was still wango-tango until her placement in March, the tooth, the money, my well being all got put on hold. This past Monday I finally made it to the dentist.

"Doc. Before you look in my mouth, you have to know a few things." I clued him in to my insane life and that it isn't because I'm intentionally negligent with my teeth but that it was a burgeoning set of circumstances that kept me away. Of course, the tooth was decayed to the bone, not salvageable. Doc was nice. He took x-rays of the others. The other side of my mouth is threatening to suffer the same fate so I have to go back in a month to repair the damage before I lose more. Then he referred me to an oral surgeon that did an emergency extraction Tuesday morning.

I left the dentist and saw the voicemail on the cell phone. The Dad and a 40 foot extension ladder had a wrestling match while I was in the chair. The ladder won but not before The Dad kept it from destroying the customer's house. The Dad's arm? Not so much.

So Tuesday was fun. Me on percocet with a swollen mouth, The Dad on prednisone with a cortizone shot in his arm. Fun times.

Then AFO's for AB on Wednesday (i forgot the camera) and back to my PCP to discuss the panic attacks and my meds. Well, panic is morphing into depression. No surprise there. So a slight med switch and the suggestion from my therapist that the PCP write a letter on my behalf to the hospital therapy team where Sissy is at to let them know that I'm being treated for situational panic and depression as a result of my child's severe needs.

It's a crap shoot but Sissy's case is being audited on the 25th of this month, a meeting I can't miss. For now, medicaid has approved her stay through the 6th of June but her meds have just been increased and she's not responding to therapy.  In other words, she may have bought herself more time. The hospital is making noise about pulling PDD-NOS off her charts so she can repeat IFI and CBAY, two excellent services ... provided the youth is receptive to that treatment plan. One long, harrowing year of those services and Sissy changed nothing. Not one damn thing. In fact, she got worse. So I'm bringing biograndma with me because she can cite family history and I'm bringing the letter from my PCP and we're going on a wing and a prayer that Sissy will stay longer than June 6th.

I like my newly found quiet, happy life. I know I'm on drugs to help me enjoy it, but the thought, just the mere thought of Sissy being home and my heart races. It is right now, just typing these words. And now tears ...

I don't really want to be the momma that has to say, "i can't raise my daughter. I love her but I just can't. It's killing me." I just don't want to be that mom. I don't think I have a choice. I love my life too much. I love that the other three people in my family are happy too.

I've also learned that I'm a slow healer. Funny, that I am just now realizing that at age 36. This tooth extraction has been tough. Recovering from the panic attacks and taking it slow to ward off depression has been slow. Recovering from the fall at the pool four weeks ago took three weeks and I still have a bruise on my leg. I'm just slow to heal. I'm also slow to process emotions. I get in a place emotionally and it just takes me time to walk through it.

Seems strange to make this revelation about myself, I doubt many people actually think about how long it takes them to heal. Turns out, I'm just slow at it.

This is the last week of school for my crew. AB's triathalon is tomorrow. Monday The Dad and I have to see Sissy for therapy and an on-campus TL. WG has her award ceremony Tuesday and a dance recital Saturday which is also The Dad's birthday. Then I'm taking my therapist's advice and getting out of here. Going some place quiet and green to think, to rest, to recuperate. With the exception of the audit at the hospital on the 25th, I'm not thinking about it. I don't want to spend my time without Sissy panicking or crying. It's hard but I'm not going to do it.

So, since I'm such a slow healer, I'm quilting. And others are quilting for me, a first.  No one has ever made a quilt for ME before!

May Quilt Panel - sandwiched
made with scraps some readers have sent me!!! THANKS!!!!

Quilted and waiting for the binding to be tacked down
The quilting is random strings in gold - my quilt interpretation of Starry Starry Night

A quilt panel the kids' grandma got for me
border added, triangles attached, pillow-cased and quilted

Baby Blues - flannel for my sister's baby
I have to finish hand quilting the cross-hatching in the nine-patches!!!

 More scraps a reader has sent - recovered old sofa pillows and ...

made matching valances for the back door

and back window!

The kids' grandma's quilt group made this prayer quilt for our family

paper piecing?!?
kids' grandma is talking me through it
Pie in the Sky is going to be the June Wall hanging!

On Thursday, the kids' grandma and I went to her quilt group/bible study where they presented me with my quilt.  We worked on paper piecing, had lunch, I took a percocet and tossed my lunch on the drive home (literally, hung my head out the window at a traffic light and hurled it all out.  fun times).  Really, I'm a SSSSSLLLLLOOOOOWWWWWW healer.  slow. Snails?  They got  nothing on me.

Anyway, while at the meeting, they read this quilter's prayer that made me cry.  It embodies who I am and what I do while I quilt.  Quilters prayer for the original site. And before I post the prayer, many, many HUGE thanks to everyone that has sent me fabric. I have been able to quilt my fingers raw without spending much money. In fact, in some cases, I've only spent the money for the batting. Words can't say how much I appreciate your generosity.

On that note, because it is helping me heal, I want to return the favor. I would like to make some lap-sized quilts for auction to raise scholarship money for Orlando 2012. If you have scraps, finished blocks without a purpose, unfinished projects, or other quilt notions that are taking up space, please consider donating them so I can turn them into love (and money) so other hurting moms can get some time away in Orlando.

Lastly, the prayer:
Guide my hands to work as Your hands work, to know the power of Your love in every stitch I make, in every thread I knot. May my hands be guided by the same love and care with every quilt I make, knowing that this love and care was and is and will continue to be a gift of blessing to the one it is intended for.

May the works of my hands be pleasing in Your sight, O God.

Lord, bless my work today.

As I choose materials and patterns, may I be reminded of the uniqueness You blessed us all with.

As I cut each length of thread, may I be reminded of the doors that must be closed in our lives so that a new and stronger door may be opened.

As I twist each knot, may I be reminded of a bond of love so strong, nothing will break it.

As I run the thread between my fingers, may I be reminded of the times You have touched my life, my heart, my soul.

As I sew each stitch, may I be reminded of the healing power of Your grace in each of us.

As I concentrate on my craft, may I be reminded of the love and care You put into each of our lives.

As I add my last stitch, tie my last knot, cut the final cord, may I be reminded of the completeness with which You commanded in each of us before we were ever given to this life.

"Whatever your hand finds to do, do it with all your might, for in the grave, where you are going, there is neither working nor planning nor knowledge nor wisdom." (Ecclesiastes 9:10)

Wednesday, May 11, 2011

Try My Best Triathalon

AB got his new AFO's this morning. I forgot to bring the camera. He's funny about these things. When I woke him up this morning, I reminded him he was getting his new AFO's and he jumped out of bed in a hurry. He gabbed the whole ride to the facility and then didn't say two words the whole time we were there. Completely clammed up. He's a hard one to read sometimes. WG came with us and did the talking for both of them. *roll eyes* She gets that gift of gab from me! Nature vs. nurture, in this case, nurture won. Not sure if that's a good thing.

Our local family Y is doing a "try my best" triathalon for impaired youths and adolescents. Since AB has gotten so good at swimming in the adaptive pool, they strongly encouraged us to join, as did his developmental delay specialist and the orthotic facility. He is officially registered. I'm so excited! I'll definitely remember the camera for this event. His adapted bicycle alone is worth a few photos - 12 inch training wheels on a bike with 18 inch tires is a sight to see.

I've been sleeping and taking naps on Sissy's bed. I gutted it, literally packed up all of her things. I know she's not gone forever but there was something very therapeutic about putting her things away for the interim. There's also something therapeutic about sleeping in her room. Last week on our phone call night she sounded fairly depressed and then in phone session last Wednesday she was evasive, defiant and argumentative. I alerted her therapist to my concern that she was in a depressive swing. True to form, by this past Sunday, she was in full blaze. Rapid cycling... fun. Last night I wasn't surprised when the hospital called and asked for approval to up her lithium. I've still got the magic touch. I might be 140 miles away and only talking to her briefly each week but I still know my kid. It makes me feel good that even though I don't feel like I am what she needs, that I am insufficient to support her in her challenges, I'm not so bad off that I can't recognize her cycling.

WG has been asking a lot of questions about her siblings lately. Natural tendency for an almost seven year old to start to think for herself and evaluate her world. She wants to understand her siblings' issues and I'm doing everything I can to explain it on a seven year old level. Gaps. Still, there are gaps in mental health. Where are the books and therapy sessions for the NT siblings to help THEM understand?

Trying my best - seems like the theme for our family presently. An aptly named triathalon for impaired persons and their families. All we can do is try our best.

Monday, May 9, 2011

This and That

A busy weekend for us before Sissy went to RTC usually meant Sissy being sent to bed early Friday night for incessant stick-poking and provoking behaviors, raging all day on Saturday or being on a six hour standoff because it was chore day, crashing and burning on Sunday and then cranking it up again Sunday night for the upcoming school week. This pattern prevented us from doing anything. We'd have plans, we'd have the if-you're-good-we'll-do-such-and-such plans. We'd intend to go to church. We'd pine about fishing, hitting up a walking trail or taking bikes to the park. We'd attempt to get the house tidy. It meant that Sissy would be on lock-down while I took WG to dance lessons and sometimes, took AB with me so he didn't have to listen to her raging for two hours.

We'd do it all with Sissy primal rage screaming.

There are so many things I don't miss.

Every morning I don't miss having to mash the key fob disarm button on the motion sensor. Every morning I don't miss waking up to the dread, the oh crap, she's still my daughter and am still responsible for her well being feeling after the four hour rage fests from the night before. Every night I don't miss the bedtime rage fests. WG and AB put themselves to bed. Imagine that. IMAGINE THAT!!!!

How do weekends without Sissy go?

Last week I was all over on Saturday. WG had dance and AB had hippotherapy and then he and I hit up the library. Sunday was my Daisy troop end-of-year picnic. I had the privilege of spinning and turning WG so she could look in the water and see herself, a brownie now! She was so excited.

This weekend we took the troop to the Aquarium as a reward for their hard work selling cookies and then yesterday morning WG and I were at the church bright and early so she could sing with cantate singers in both services for mother's day.

AB got a new camera and has taken over a hundred photos looking for ghosts and The Dad and he saw a movie.

Sunday night is our call-sissy night. The Dad obliged to dial the number as it was Mother's Day and I couldn't bring myself to do it. I knew she hadn't remembered and besides, I'd had a lovely day with the functional four of us. He put her on speaker phone.

"Hi Sissy."

"Hi Dad."

"How are you?"


"Do you know what day this is?"

long pause ... "Um, oh yeah. Sunday."

"And..." he attempted to lead her.

"Oh right. Mother's day."

"I was calling to see if you'd like to wish your mom happy Mother's day."

"Oh yeah. OK."

In stark contrast to last week's depressive funk, this week she was high as a kite, speed talking about how wonderful she's been and blah blah blah.

*big huge exasperated sigh*

That's how my weekend almost ended.

As AB and WG were getting ready for bed, WG teased AB about something and he cracked a smile and slight chuckle. (HUGE!!!) So I said, "AB, are you gonna stand for that? I think that deserves a tickle. Here, I'll hold her still for you." I grabbed WG who squealed in delight while AB tickled and laughed.

That, my friends, is amazing. Absolutely amazing. WHEN does that happen in my house? Never. Happy mother's day to me!

As I told The Dad last night when we went to bed, "It was a lovely mother's day. I'm so glad to finally have a happy family. I don't know how to change it but I just can't go back to hell with Sissy."

AB had a busy week with doctors, still trying to figure out if he's growing too fast. We upped his resperidal to help with the mood and took an x-ray of his left hand to get a look at his long bone growth. His blood work from last month came back showing the need to watch for a slowing thyroid and an increasing blood sugar. Yay, more things to think about for AB: hypothyroidism and diabetes. Hey, at least he hasn't had any seizures which the doctors have all said is a possibility. This week AB gets his new AFO's. HOORAY! I'll be sure to get pictures.

WG is officially in the gifted program for school next year, I signed the permission slip this past week. She'd had some wobbly moods, impulsiveness and behaviors at school again so we opted to put her on melatonin too. I am happy to report that sleep deprivation appears to be all she was suffering from. Heck, weren't we all? Sissy's behaviors have run all four of us into the ground. I'm not kidding, with only one NT, I am always on high-alert looking for the possibility that she will end up with mental health concerns too. I'm glad it's only a sleep issue. Next up for her is the dance recital. I can't wait!!!!

The Dad is working, working, working. Which is good but he's tired. At least he comes home to a happy house and not diving head long into diffusing Sissy or safe guarding AB and WG while I diffuse Sissy.

As for me, I still haven't heard about the job but it's only been a week. In the meantime, i'm doing some brainstorming and planning for the new FFCMH chapter I've started in my community. And of course, I'm quilting. DUH. Here's photo proof. And a many, many HUGE thanks to Mamadrama who sent me a fabric stash including some yardage of of the perfect fabric for the backing! THANK YOU THANK YOU THANK YOU!!!  This is a scrappy quilt idea taken from Bonnie Hunter.  The blocks are 5 inches finished with half inch sashing.

panel on top of the backing

close up of some of the blocks

laying out the sandwich!

it's done and hanging

close up of the backing and machine quilting

Friday, May 6, 2011

Custody relinquishment

Custody Relinquishment -
What do you need to know?

Some parents are faced with a very difficult decision, they must choose to either keep their children at home without the means to give them the mental health and supportive services that they need or have their child placed in the child welfare and or juvenile justice systems to obtain mental health services.1

For youth placed in the child welfare system 52% will reunify with their caregivers, 20% will be adopted, and 10% will emancipate or age out of foster care.2

More than 1/3 of homes seeking to adopt a youth with special needs back out because of their prospective child’s emotional, mental or behavioral problems.3

Of youth who age out or emancipate from the foster care system, ¼ are incarcerated within two years and only ½ graduate from high school. 4

Research on youth who emancipate from foster care suggests a nexus between foster care involvement and later episodes of homelessness5

The majority (80%) of youth in foster care have developmental, emotional, or behavioral problems6 and yet, of this majority, less than 1/3 receive mental health services. 7

Bottom line, placing a child or youth in the foster care system for mental health services can create more risk than it does supports. We should never ask parents to make such a decision.

“I believe that if my adoptive parents and I had better supports in our home, I could have stayed there. Instead I was moved around and wound up homeless when I was 18 and still in high school.” – Eric Tennessee, Foster Care alumni (age 26)

Make a Change Today:

· Educate your legislators, and policy/local decision makers to support policies that keep families together

· Reach out and develop supportive, caring relationships with youth and their families

· Engage children and youth in community activities and services before they enter foster care

original document sent in email format to FFCMH members in support of national children's mental health awareness week. Support FFCMH by becoming a member today.

1 United States General Accounting Office. Child Welfare and Juvenile Justice Federal Agencies Could Play a Stronger Role in Helping States Reduce the Number of Children Placed Solely to Obtain Mental Health Services. Washington D.C.: United States General Accounting Office, 2003.

2 http://www.acf.hhs.gov/programs/cb/stats_research/afcars/tar/report16.htm.3/16/2011

3 http://www.acf.hhs.gov/programs/cb/pubs/barriers/family_3.htm#barriers 3/30/10

4 Time for Reform: Aging Out and On Their Own. (2007). Kids are Waiting Fix foster Care Now. The Pew Charitable Trusts.

5 Fernandes, A. L. (2007). Runaway and Homeless Youth:Demographics, Programs, and Emerging Issues. Washington D.C.: Congressional Research Service.

6 http://www.cwla.org/programs/bhd/mhfacts.htm 3/30/09

7 Austin, Lisette. (2004) Mental Health Needs of Youth in Foster Care: Challenges and Strategies. The Connection, 20(4).

Thursday, May 5, 2011

Youth M.O.V.E.s

An subsidiary organization of FFCMH is run, supported and created by youths with mental health challenges!

Youth M.O.V.E.s is an opportunity for your youth to have a voice, get involved in the community and find camaraderie with other youths that have similar challenges.

There is no better way to help our youths move toward adulthood than to help them advocate for themselves. Knowledge is power and action will M.O.V.E. them!

Click the link to find a chapter near you. Help your youth M.O.V.E. to greater heights, today!

This is National Children's Mental Health Awareness Week, initiated by the National Federation of Families for Children's Mental Health, a parent support network.

Wednesday, May 4, 2011

The voice of parents

Because the children's voice is heard so often when raising a child with mental health needs, the voice of the parents is rarely heard. Please watch so you will better understand what parents have to say about their children and the struggles we endure attempting to support, advocate for and raise our children.

Parents and Siblings of Traumatized Children 
Matter Too 
This video presented by ATN in honor of National Children's Mental Health Awareness week 2011, an initiative generated by FFCMH

Tuesday, May 3, 2011

The first five years

This video will show you how crucial the first five years of child's life are in preparing them for a life of success.

But what if your child's first five years are challenged by environmental, social, economic, developmental, or other factors?

What if your child's first five years include trauma, abuse, disruptions, changes in care givers?

What if your child's first five years are plagued by the untreated mental health issues of the care givers they are raised by?

What if your child's family history includes a genetic or environmental proclivity toward mental health concerns?

Children's Mental Health Matters.

If you know a family that has children with mental health issues, please support them. Please praise them for their hard work. Please tell them they are doing a good job. Please let them know you are there, anytime, any day. Please understand that their child's mental health issues are a life long struggle that is made better by community supports, love, guidance and compassion. Let the stigma of misunderstanding about mental health fade away. Help children and family at risk for mental health issues. Because children's mental health ... matters.

this is national childrens mental health awareness week, sponsored by the national federation of families for children's mental health, FFCMH

Monday, May 2, 2011

Why we Need Awareness

This week I'm going to do my best to spotlight different aspects of Children's Mental Health Awareness.  Today, Please see this link, WHY WE NEED AWARENESS posted by Lisa Lambert, the founding member of a Boston, Massachusetts chapter,PPAL, a non profit organization that is a member of the FFCMH.

Don't forget to wear your green ribbons!

this is national childrens mental health awareness week, sponsored by the national federation of families for children's mental health, FFCMH

Sunday, May 1, 2011

National Children's Mental Health Awareness Week

Did you know that May 1, 2011 through May 7, 2011 is National Children's Mental Health Awareness week?

Did you know you can wear a green ribbon to show your support? If you want one, email me using the link on my profile page with your snail mail address.

Click here for more information.

Spread the word, advocate for your kids!