This Side of the Ditch

EMDR Miracle?

2011-11-25T21:03:00.006-05:00

My 9 year old is doing VERY well right now, and it's as if he's turned a major corner in healing. He participated in EMDR (eye movement desensitization and reprocessing)
therapy several weeks back. Prior to this he was raging maybe 3 or 4 times a day, constantly dysregulated, angry and violent. Full on fight or flight mode. Mostly fight.

He had gotten so out of control, that his psychiatrist handed me a brochure at his last doctor visit, and told me to go home and talk to my husband about it, and seriously consider it as the last resort option to help our son, as medication and therapy was failing. "It" was a Residential Treatment Center three hours drive away. I was stunned that that is what we had come to as a solution. Especially after a weeks hospitalization in August. He had been given one session of EMDR in the hospital, but it was conducted under less than stable circumstances and we saw no real benefit at the time. We decided to give it another try with his private therapist and an EMDR professional about a month ago. The single session lasted about 20 minutes. For several nights after EMDR, he had vivid and often frightening trauma nightmares, then it ceased entirely. We were told to expect this as his trauma was "purged" from the frontal lobe where it had taken up residence.

Suddenly, within days, we saw new behaviors that we'd never seen.... cuddling, lots of "I love yous", laughing, excitement and joy, wanting to hold hands and be CLOSE -- touching, intertwined fingers. And most significant, he crawled into bed with me while I was asleep one morning, and I woke up to him propped on his side looking at me sleep. The look in his eyes can only be described as "in love". When I asked him what he was looking at , he replied "You" "I'm looking at you cause I love you".

The change in him has been so significant, that even his teachers called me in for a conference to talk about the very obvious change in him at school as well. All three teachers noticed individually (and together in conferencing about it before calling me in) that he seems like a different child. They note they all three finally see EMOTION in him -- be it sad, happy, puzzled, upset, etc. rather than the flat affect they were accustomed to seeing. That it's as though a veil has been removed and he can "feel". I am noticing the same things at home too. Not just with less explosive behavior, but with attachment and bonding, eye contact, compliance, joy in simple things, and even empathy. He's been SNUGGLING with me and wanting to be touched. There have been several instances where we've had to set boundaries and tell him "no" - a no that normally would evoke a rage or meltdown or bargaining or all three... and 90% of the time he's accepted a "no" and the other 10% he was angry (door slamming/yelling) but it resulted in him going to his room and crying rather than exploding and being destructive or violent. Instead of being angry and exploding, he's getting his feelings hurt and being disappointed! Like a regular kid! It's been AMAZING. Hoping it holds out! THIS is the son that I know lurks underneath all the hurt. God, please let this be our miracle!

RAD in the news

2011-10-18T21:09:00.003-04:00

A fabulous article on RAD - reactive attachment disorder. We need more articles like this to bring awareness to our communities about the effects of abuse, neglect and trauma on our children. Children are NOT as resilient as we've always been led to believe. It's time everyone realized that.

Here's a movie that is still in production called The Boarder. I think this will be eye-opening for many.

"Love, literally, grows the brain."

2011-10-15T10:25:00.001-04:00

Why my child struggles so hard despite all the love and support he now has, and why it is so important to intervene EARLY in child neglect and abuse situations. Even emotional neglect can cause permanent brain damage. "Love, literally, grows the brain." If you suspect child abuse or neglect, be a child's hero. Please.

In search of the trigger

2011-10-02T12:47:00.002-04:00

The word “no” meant “rejection” and suggested disapproval of him to his very core.

Please Hear What I'm Not Saying

2011-08-10T01:37:00.004-04:00

Please Hear What I'm Not Saying

Don't be fooled by me.

Don't be fooled by the face I wear

for I wear a mask, a thousand masks,

masks that I'm afraid to take off,

and none of them is me.

Pretending is an art that's second nature with me,

but don't be fooled,

for God's sake don't be fooled.

I give you the impression that I'm secure,

that all is sunny and unruffled with me, within as well

as without,

that confidence is my name and coolness my game,

that the water's calm and I'm in command

and that I need no one,

but don't believe me.

My surface may seem smooth but my surface is my mask,

ever-varying and ever-concealing.

Beneath lies no complacence.

Beneath lies confusion, and fear, and aloneness.

But I hide this. I don't want anybody to know it.

I panic at the thought of my weakness exposed.

That's why I frantically create a mask to hide behind,

a nonchalant sophisticated facade,

to help me pretend,

to shield me from the glance that knows.

But such a glance is precisely my salvation, my only hope,

and I know it.

That is, if it's followed by acceptance,

if it's followed by love.

It's the only thing that can liberate me from myself,

from my own self-built prison walls,

from the barriers I so painstakingly erect.

It's the only thing that will assure me

of what I can't assure myself,

that I'm really worth something.

But I don't tell you this. I don't dare to, I'm afraid to.

I'm afraid your glance will not be followed by acceptance,

will not be followed by love.

I'm afraid you'll think less of me,

that you'll laugh, and your laugh would kill me.

I'm afraid that deep-down I'm nothing

and that you will see this and reject me.

So I play my game, my desperate pretending game,

with a facade of assurance without

and a trembling child within.

So begins the glittering but empty parade of masks,

and my life becomes a front.

I idly chatter to you in the suave tones of surface talk.

I tell you everything that's really nothing,

and nothing of what's everything,

of what's crying within me.

So when I'm going through my routine

do not be fooled by what I'm saying.

Please listen carefully and try to hear what I'm not saying,

what I'd like to be able to say,

what for survival I need to say,

but what I can't say.

I don't like hiding.

I don't like playing superficial phony games.

I want to stop playing them.

I want to be genuine and spontaneous and me

but you've got to help me.

You've got to hold out your hand

even when that's the last thing I seem to want.

Only you can wipe away from my eyes

the blank stare of the breathing dead.

Only you can call me into aliveness.

Each time you're kind, and gentle, and encouraging,

each time you try to understand because you really care,

my heart begins to grow wings--

very small wings,

very feeble wings,

but wings!

With your power to touch me into feeling

you can breathe life into me.

I want you to know that.

I want you to know how important you are to me,

how you can be a creator--an honest-to-God creator--

of the person that is me

if you choose to.

You alone can break down the wall behind which I tremble,

you alone can remove my mask,

you alone can release me from my shadow-world of panic,

from my lonely prison,

if you choose to.

Please choose to.

Do not pass me by.

It will not be easy for you.

A long conviction of worthlessness builds strong walls.

The nearer you approach to me

the blinder I may strike back.

It's irrational, but despite what the books say about man

often I am irrational.

I fight against the very thing I cry out for.

But I am told that love is stronger than strong walls

and in this lies my hope.

Please try to beat down those walls

with firm hands but with gentle hands

for a child is very sensitive.

Who am I, you may wonder?

I am someone you know very well.

For I am every man you meet

and I am every woman you meet.

Charles C. Finn

September 1966

Picking up The Pieces

2011-08-07T21:41:00.014-04:00

Our family has been through some pretty difficult challenges this past week, and I figured that now was a good time to jump back in here and get back to my blog that I've abandoned for nearly a year. Who knows what new roads are ahead for us, but I feel the need to bring our latest challenge here and preserve it - so that hopefully one day we can look back and say that THAT was what life was like... THAT was what we overcame... and so that other families facing similar challenges will know that they are not alone. They will know not to give up hope.. even when things are at their very worst.

We had to do the unthinkable last week - we committed our 9 year old child to a mental health hospital. We left him at the children's hospital psych ward last Monday night, and turned his care over to strangers and let go of every bit of parental authority and control we had.. It's a well respected facility, but still, this broke our hearts to be forced to do this. He really got out of control so much so that he became a danger to himself and to us. He asked us to take him, so he recognized that he needed help. He said - during a lucid moment on the way to the hospital - that he is afraid that he can't control himself. Then he sobbed all the way to the hospital - but quietly so we wouldn't hear him. He looked so sad, small and scared as we told him goodnight that first night, and knowing he'd not be coming home with us, but he tried to be brave. It was devastating.

We visited him every day, and slowly he replaced the broken, depressed little boy, with one who was happy and more confident and in control. We visited him every day for dinner time, and we also had 2 family counseling sessions while he was there. Dallas now has 2 shiny new diagnoses: PPD NOS and reactive attachment disorder (RAD). The previous DX of bipolar I has been changed to mood disorder NOS, and they now added a new med - Celexa, and discontinued the Topamax. They believe that side effects of the Topamax he was on were causing some behavior disturbances. He was in the safest place to try this, so we agreed. The therapist also used EMDR therapy to try and get him to work though some of the grief and trauma issues. I am glad he was in the hospital for that. It was a very emotional and painful process for him.

They also worked on behavior goals, anger management, nutrition and self care skills. All in all, it was a very painful, but at the same time, a positive experience for all of us. But most especially Dallas. We are extremely proud of him. He faced a lot of his demons head on - alone - and he met the challenge. He finally came home today and we are so happy to have our son back.

This road to healing is not going to be a stroll down Easy street, but now we have more tools to rise to the challenge. I am so very proud of my son.

<3

Welcome to the Club

2010-09-12T14:02:00.002-04:00

To my friends with special needs kids -- Here is a blog entry that will probably leave you speechless, and maybe like me, in tears. Does it speak to your heart too?

Saving Vanessa

2010-07-08T19:37:00.003-04:00

This story breaks my heart. I've been down this same road. It still hurts so, so bad.

As for me and mine, I'll be back soon for a personal update from the trenches. Life has been one out of control roller coaster. Mama needed a break from both living it and writing about it. KWIM?

My God...

2010-04-09T14:05:00.004-04:00

Mom and grandma send adoptive son, 7, back to Russia...alone.

They should both be prosecuted.

Another scandal over adopted Russian child in US

Tag cloud: Russia, children, Society, Commentary, World, Pavel Astakhov

9.04.2010, 15:36

Another scandalous case, concerning a child who was adopted by an American citizen, has triggered a new wave of anger in Russia. A 8-year-old boy, Artyom Savelyev, who does not speak Russian, has arrived in Russia from the USA alone with a note, saying that his adoptive mother had disowned him.

This outrageous case is not the first one in a long chain of abusive acts against Russian children, who were adopted by foreigners. But the Russian Ombudsman Pavel Astakhov, who is currently finding out the details of this barbarous case, says he does not remember that such an act of cynicism - meaning that a little child was sent back alone across the ocean - has ever occurred before:

"The boy had with him only a covering letter, saying the adoptive mother was giving up her the adoption rights because she did not want to destroy herself, her family and her relationships, as she says".

Artyom's adoptive mother was a single woman, Torry Ann Hansen from the State of Tennessee. Both diplomats and journalists are trying to contact her now, aiming to find out what were the motives of her deed. As is known, the boy has arrived in Russia on a United Company flight. Protecting its passengers' interests, the company is providing no information about those who were on board, but says that all the procedures necessary for children traveling alone, or Unaccompanied Minor Service, were observed. A person, Artyom Savelyev was not acquainted with, met him in Moscow. He was found through the Internet, and he received 200 dollars for bringing the boy to the Russian Ministry of Education and Science.

In an interview for the Voice of Russia psychologist - Academician Sergei Klyuchnikov from the Russian Academy of Natural Sciences - explains the possible motives for the action that was committed by the adoptive mother of Artyom Savelyev:

"Probably, the child proved to be a problematic one. I do not rule out that our services did not tell her frankly that the child had some problems, but she herself should have shown her will, attention and interest, and to weigh her own strength. The fact that the child was sent back demonstrates that a person - in this case, Torry Ann Hansen - has taken such a serious act as an adoption as an ordinary purchase and returned the boy, as if he were simply goods she did not like".

Artyom Savelyev lived in the USA under the name of Justin Hansen for 6 months. Earlier he was an inmate in an orphanage in Partizansk in the Maritime Territory in Russia. And most likely, he will have to return there. So much the better, because cruelties of adults to children are never justified.

According to the Russian Ministry of Education and Science, 16 Russian children have died over the past 17 years through the fault of foreign adoptive parents. Ombudsman Pavel Astakhov and the deputies of the United Russia faction defend the toughening of the foreign adoption procedure. Likewise, a number of experts insist on the strengthening of control of Russian children, adopted by foreigners. Regrettably, for the time being such a practice does not exist in Russia. We receive nice accounts with spectacular photos of happy children. And then we learn that the children were beaten and humiliated or that they were treated like animals there.

Time will be needed for both Russia and America to study all the particulars of the difficult case of Artyom Savelyev as people in the USA are also angered with the behaviour of the adoptive mother of the young boy.

Source: Voice of Russia.

The unlucky Baker's Dozen eggs

2010-04-04T22:27:00.007-04:00

Our Easter bunny always hides a dozen plastic eggs in our front yard. (easier to make sure all are accounted for). Some are stuffed with candy, and some with money. This morning Dallas only found 11 eggs, since the Easter Bunny apparently had had too many glasses of wine and couldn't remember where she planted all the eggs the night before. Bad bunny!

Our son looked and looked - and we helped him - and he was getting extremely upset - nearing meltdown stage - that he couldn't find #12 but wouldn't give up looking. So being the quick-thinking mom and dad we are, we ducked in the house and grabbed a spare plastic egg that we thankfully had leftover. I asked my hubby for some change or a dollar bill to slip inside, but he only had big bills, and NO change. So he quickly dug in his wallet and handed me the smallest bill he had - a $5 bill to stuff inside. 8-/ Yeah, the Tooth Fairy has gone down that road too... but I digress...

My hubby walked back out with the egg hidden in his pocket, and quietly planted the egg in an easy to find spot, and it was found. It was dubbed the "Golden Egg" and all was right with the world... at least until later on today, when Dallas found egg #13...

Then all hell broke loose, but I'll save the rest of the story and our Easter Day Disaster update for another day. I'm just too tired to rehash it all right now. So much to catch up on here over the last month anyway, but suffice to say things have been extremely difficult lately. Today did end calmly and peacefully however, and with a hug, a kiss and big bouquet of flowers for Mom from my little guy, which my son insisted he had to buy for me when he and his dad went to the store. My son knows when he's gone over the line, and he's feels real remorse when he does. For that, and for these gestures of love, I am very thankful.

Happy Easter everyone!

What a difference a year makes!

2010-03-02T21:01:00.003-05:00

The following is a desperate please for help I posted on a "Parents of Bipolar Children message board last May, almost one year ago. Reading it again was nearly a trigger for all the hopelessness and FEAR I felt back then. This was our life, pre-proper psychiatric care, and pre-bipolar medication, and after 3 years of therapy, behavioral modification, research, advocacy and and intervention. How can anyone, after reading this, and knowing we are successfully medicating our child for bipolar disorder, say it is no longer a valid diagnosis in children? Or a temper tantrum disorder. It is so, so much more:

I am mom to a 6 (almost 7) year old boy who has been dx with ADHD, anxiety and PTSD. He was adopted from foster care at age 4. He's the light of our lives, and a beautiful, charming bright child who has bonded well, despite his neglected, chaotic and abusive past. It has been a long, difficult struggle to help him though. Yesterday he became so violent that we had to call 911. That was the breaking point for us. We have to do something to help him as our family can not survive like this. He has ALL the flags for bipolar, except for mutilation, fire-starting and animal cruelty. We learned that there is a biological family history of generational violence, bipolar, depression and generational alcoholism on both sides. His "old school" psych has refused, for reasons beyond my comprehension, to evaluate, consider or treat him for BP, but is treating for ADHD (SA Ritalin) and sleep disturbances (Clonidine). He recently prescribed tricylic antidepressants as well because son had been threatening suicide (during a depressed cycle), but after much personal research (and our suspicions of BPD) we chose not to give him those for fear of psychotic/suicidal reaction. One of the main warnings of that drug was not to give to patients if there is even a possibility of BPD. It's the one medication decision WE made that goes against the pdoc. We are presently acquiring new insurance so that we can switch psychs and hopefully get a better evaluation.

I read The Bipolar Child searching for answers on my own, and it was as if a light switch had been turned on. THAT was MY CHILD.

I am not able to work as I never know if he's going to get to school on time (or even get out of bed!) or need to come home, or sleep at night, and we have lots of therapy appts, I have to help him with homework which takes hours at times, and generally, raising him has consumed my entire life. My son needs constant supervision because of his impulsive and dangerous behaviors, but we also walk on eggshells at times to not "trigger" him. Often, no matter what we do, he's spinning out of control and verbally and physically assaulting mostly ME, his mother. He rules the house when he's "spinning". Literally spinning. In a rage, he destroys property and has tried to hurt himself by banging his head, throwing his body against the walls and kitchen counters and hitting his own self. When he's depressed, he threatens suicide and says he has no friends and is stupid and withdraws. He does fin in school. The minute I pick him up from school and he feels "safe", often he starts begging for food or candy and being aggressive and oppositional. Most outsiders and friends don't see this side of him. He begs us to hit him. There are other times when it does feel normal and we can do normal family things (always keeping in mind at any moment we may have to try and head of a meltdown or rage, or leave an activity all together), but as time goes on, that "normal" is less and less and his behaviors are more severe and frightening. He has threatened to stab me and cut my head off while in a rage. His pupils are so dialated that his blue eyes are almost black and he seems "not there". He is very remorseful when an episode is over. Sometimes, he doesn't even recall all that he's done. He describes how he feels when he's cycling as his brain "is a computer and it has to much stuff spinning around in it". His life is miserable and we don't know how to help him.

This can't be just ADHD. He has a wonderful therapist, but there is only so much she can do. I just wondered if anyone else had this kind of struggle getting proper help and dx for their child so young?

Sad, scared, tired, beat up, mommy...

Reversing a Decade of Progress

2010-03-02T07:57:00.003-05:00

In a wonderfully written and well-thought out article, award-winning author, journalist, and online friend, John McManamy grades the new DSM-V proposals regarding Childhood Bipolar. Very well done, Mr. McManamy. Very well done. If only they'd listen to the voice of reason...

My Beautiful Boy at OneTrueMedia.com

2010-02-28T19:39:00.002-05:00

Make photo slide shows at www.OneTrueMedia.com

'We've Got Issues': The Myth Of The Overmedicated Child

2010-02-28T09:48:00.003-05:00

"We tend to believe that, today, we have moved beyond the age-old prejudices against people with mental illness. But, in fact, that prejudice is alive and well in our time and has a new and socially acceptable face: it expresses itself in the eye-rolling laments about "pushy parents" and "drugged-up kids." ~ J. Warner

This is brilliant! New York Times blogger Judith Warner examines the popular argument that Americans are over-medicating their children, and her hopes that her book will begin to change the way society begins to view families and children whose lives are impacted by mental illness and neurological disorders.

Adding another med...

2010-02-27T11:32:00.004-05:00

Well, cysts were indeed found, and a dx of multi-nodular goiter was confirmed. After two different case conferences between specialists and radiologists (and a wait period of almost three weeks that made me a crazy woman wondering if we had a biopsy in the near future) the doctors decided to try Dallas on medication. He's now taking 50 mcg. of Synthroid daily, to see of it will help shrink the enlarged thyroid and reduce the cysts. Hoping and praying that this works for him. The side benefit may be that it helps with his mood and body temperature dysregulation issues.

So far, so good, and no side effects that we can tell. He will be go back in in 8 weeks for another ultrasound and another thyroid blood panel to see if he's made any progress with the medication.

Off topic, but Dallas also earned his 2nd stripe in karate last week, and got all 100s on his math and 2 language tests, making great progress in OT and PT, and his behavior has been manageable. :-)

Go Dallas!

You say temper, I say rage.

2010-02-21T11:41:00.003-05:00

Take the opportunity to have some input into the New DSM-5 development:

Here is my letter:

To whom it concerns,

My sincere hope is that this label does not preclude a separate entry for Childhood Onset Bipolar Disorder, if that child also experiences cycles of mania and depression that presents with suicidal ideation, and cycles from one extreme mood to another, much like an adult. My second hope is that if this label is indeed adopted in lieu of Bipolar Disorder, the description, Temper Dysregulation Disorder with Dysphoria, will be changed to something that reflects an actual mental health disorder akin to bipolar disorder - such as Mood Dysregulation Disorder with Dysphoria, rather than labeled as something that confers a parenting issue/behavioral problem. Terming the intense, often psychotic rage that a child displays in an almost seizure-like manner, a "temper", invalidates any real mental health disorder, and instead confers a discipline problem, or parenting issue, which is clearly not the case. For far too long, society has turned a disapproving eye toward the parents of those unfortunate children who have uncontrollable mood disorders, and put the onus on the parents as somehow responsible for the child's condition, rather than understanding the child suffers from a debilitating brain disorder, not unlike adults with bipolar disorder.

Please consider a more appropriate name for what we now unofficially call "childhood bipolar disorder" if DSM -5 is not planning to recognize it as an actual disorder similar or equal to adult bipolar disorder. If adult medication, prescribed off label, improves the symptoms for children as it does for adults and creates stability of mood, one could reasonably assume the child has bipolar, or some juvenile form of the same. Unless DSM is planning to rename adult bipolar disorder also as Temper Dysregulation Disorder with Dysphoria, it is inappropriate to make a distinction between a brain disorder that children and adults both suffer, but only one group can claim as a "real" chemical imbalance in the brain, and the other rely on adjustments to parenting techniques. There are instances of young children -- as young as 8 years old - un-medicated, or mis-medicated - committing acts of suicide. That is clearly not temper-driven behavior.

With all due respect to the professionals involved in revising the manual, please understand, especially from a parent as well as a teacher's perspective, the use of the word "temper" downplays the serious affect of this childhood disorder we can only now label a mood disorder, or cautiously, childhood bipolar disorder.

Sincerely,

Dawn Scott
Mother to a 7 year old child dx as Bipolar I, and now stable on adult bipolar medication.

"Dr. Jekyll and Mr. Hyde"

2010-02-16T21:56:00.004-05:00

I've used that description at least a hundred times, to describe the behavior that comes with childhood bipolar cycling. It's exactly what it's like.

A really good article and video on Childhood Bipolar Disorder and one single-parent family's struggle with the disease. I wish I could give Linda Heckman a great big hug. I can't imagine walking this road alone with one child with bipolar disorder, let alone two...

The Good, the Bad, and the Scary.

2010-02-14T22:59:00.005-05:00

Well, life has been busy and chaotic the last 6 weeks or so, and that's my excuse for not updating my blog... and I'm sticking to that excuse.

Where to begin? Dallas started karate class about 4 weeks ago, and it so happens that the twice-weekly classes are back-to-back with his therapy appointments right after school, so he's been a busy, busy kid. And not one complaint. He's even taken to doing as much of his weekly homework packet that he can in one day, so that he's freed himself up for his activities.

He already earned his first orange stripe and is well on his way to his second, and only 4 weeks in. I am really, really proud of him. And he's pretty pleased with himself too.

He also received his 2nd quarter report card and came home with STRAIGHT As again! Even in citizenship. We are over the moon! He's doing very well in school, and everything is finally coming together for him. He's still struggling with reading - and may always - but he's hanging in there and doing his very best and it shows. He actually loves school now. What a change from this time last year!!

He's had a few setbacks behaviorally (coincided with the full moon too ... no surprise there!!) but the cycle ended really quickly and did not escalate to the levels we have previously seen. Two days of rapid-cycling behavior, 2 rages, and one day afterwards of depression and lethargy. Not too bad looking back, but still hard at the time on all of us...especially HIM. He hates being this way. The meds continue to work for him. It's not perfect, but it's more than we had ever hoped for, and miles from the dark place where we thought he'd need to be hospitalized. So far from that. He's more an more like a "typical" little boy with some attitude at times.

As of today he's doing fantastic. He even overloaded on Valentine's candy and sweets today and still... great. He's been extra cuddly and loving lately as well. I soak all that love right up whenever I can get it. It was a good Valentine's day. :-)

Now for the worrisome end of things: Dallas saw a pediatric endocrinologist on the 5th of February for a sizable swelling in his neck and for concerning thyroid blood levels. More extensive thyroid blood panel was done that day, and a thorough exam and consultation. We waited 9 months for this appointment, so we were grateful to finally get in, and the doctor was wonderful. The wait to be seen was 9 months after referral. His pedi had said to expect a year's wait, as there are only two pediatric endocrinologists in this entire region. The best of the best doctors too, I'm sure, but still crazy. It turns out the endocrinologist is being very aggressive and ordered a thyroid ultrasound. We were told following that may likely be a radioactive iodine scan and/or needle biopsy. The dx was goiter- unspecified, and the endo took one look at his neck and said that was all enlarged thyroid. I know that thyroid cancer in young children is rare, but I am scared. We have no biological history to go on, and he has all the red flags. Yep... I Googled like an idiot.

His numbers on previous thyroid lab tests his pedi and pdoc ordered were elevated, but not alarmingly, so he was probably pushed to the back of the list as not urgent. Now that he's been physically seen and examined by a specialist (and not just lab tests results on paper), they're stepping testing up more quickly. That makes me happy and scared at the same time. If we have to do the needle biopsy, which is likely, I have no IDEA how to explain this to my extremely needle phobic son...

The endo also asked if he was being seen by a neurologist as well as his pedi and pdoc. He seemed to think that with all of Dallas' issues and unknown history, it would be beneficial. We've had both his pedi and pdoc (and therapist) say that they didn't think it was necessary, but now I question whether we should have pursued that anyway. Or if we still should.

One thing at a time I guess.

Interestingly, the endo did not seem to feel that any thyroid dysfunction he may have is likely causing his behavioral issues or presenting as bipolar or anxiety. He says it may be making some of those symptoms more acute, but not causing them. He did say that some meds can cause thyroid regulation issues however. I was kind of hoping we could throw out the whole nasty bipolar I dx and all the meds and hell that comes with it, and instead give him some thyroid pills.

One of my friends whose husband is hypothyroid and who has done a ton of research, today mentioned how I've told her how much Dallas craves salt. I mean REALLY craves salt and salty foods (addicted to Ramen and Beef Jerky, licks salt shakers, tries to salt already salted foods, etc...) and mentioned that maybe he has some genetically-caused iodine deficiency. That question was never asked in consultation, so I hope maybe she's onto something and lab tests will show this is an easy fix w/ iodine supplements maybe...?

We had the ultrasound done on Friday the 11th of February.

There is "something" there, even to my uneducated eye. The sonographer consulted with the radiologist after the scan, asked us to stay in the waiting room, and called us back in for a re-scan with the pediatric radiologist present. He told her where to scan and take images, and kept saying "right there", "that one", etc... as the lumps and darker spots were showing up on both sides. No one could tell me anything positive or negative. We will have to wait for the endocrinologist to give us the results, and tell us if we have to do a biopsy. I'm more than a bit freaked out.

Hoping for answers soon...

INTUNIV is working!

2010-01-06T02:39:00.003-05:00

Dallas is now on his 16th day of UNTUNIV (8th day of his therapeutic 2mg dose) and doing extremely well. There are still some periods of tiredness that his pdoc is pretty certain he'll adjust to in the next week or so and it has lessened some more each day, but other than that, he's doing better than he ever has! No opposition, no meltdowns, no impulsitity, no reactivity and LOTS of loving, cuddling, lots of "Mom, I love you to infinity-infinity-heaven-infinity" behaviors and overall emotional stability. He told me today that he loves school (??!) and he is just happy as a little clam all day long and wakes up pleasant and happy and goes to bed just the same. There are no huge power/parental struggles anymore, and he's back to being the kid. His appetite has been great, he's following directions and cooperating, homework was a breeze, no signs of agression, anxiety, stress, depression or mania. Upon being questioned, he told his OT that the medicine makes him "feel great", and "all the things swirling in my head have stopped". He made it through his first Christmas season ever like a normal kid and no rages, anxiety, meltdowns or unhappiness.. Such a contrast to just 3 weeks ago! For now, Dallas is the kid I always knew was "in there".

I have nothing but great things to say about this medication, other than I wish it was little less expensive. :-)

Soooo sleepy...

2009-12-31T12:13:00.002-05:00

Since Dallas has been on the 2mg dose of Intuniv, he's been unusually sleepy during the day. He' s not raged or melted down or shown any opposition -- which is the goal, but he's not "himself" either. His eyelids always look heavy, he has much, much less energy and motivation, and his enthusasm is so much less. His affect is kind of "flat". He says he doesn't feel good, and I'm afraid that the tiredness is what he's feeling. I've tried to reach his pdoc twice and only getting answering service, so I'm pretty sure she is out of the office until Monday.

I hope this is just his body adjusting to the medication change, as this is the dose his doctor prescribed. He goes back to school and to OT on Monday, so we'll get a better picture by then. For now, my boy who never ever napped, even at 4 years old, and who could stay up all night and exist (but horribly) on 5 hours of sleep, has had two naps in one week. I don't like the feeling he's being sedated by this medication. Not at all.

Why does it feel like it's always either one extreme or the other?

Another adoptive family wanting to give up...

2009-12-30T10:59:00.006-05:00

As an adoptive mom of a special needs child who came from foster care with issues (some apparent but most latent), and later diagnosis much like this 11 year old child in OK, I have to say that I can’t imagine ever “returning him”. He’s my son through thick and thin, for better or worse. I made a forever commitment to him to be his mother. I also have to say that rather than lobby the state to “take children back”, there needs to be a lobby of the state(s) to offer more resources (such as federally-mandated and federal or state-funded residential therapeutic treatment) for families that adopt special needs children who need more intensive services than they can receive in-home.

There should also be the option of renegotiating adoption subsidies and post adoption services that rise to the level of need of individual families, rather than some arbitrary figure that fits in the state adoption budget. Finally, the state needs to take some financial and social responsibility for children who have been in their care and custody while in fostercare and that THEY have promoted to the damage that these children suffer – we need biological parent case plans with a shorter timeline to either reunification or termination, adherence to the federally-mandated ASFA, appropriate and immediate therapy for every.single.child in fostercare who has suffered the trauma of loss, disruption, multiple transitions, abuse or neglect, and family court judges and caseworkers who are trained to PREVENT situations such as the damage done to this child and the fear this family experiences as they are basically “thrown to the wolves” once the ink is dry on the adoption order.

Lastly, pre-adoptive parents going into older child adoption need to KNOW (through intensive education, training, and networking) that there is always the potential for serious issues and love alone is not a cure all. Adoptive parents need to go in understanding that the child may not attach to you, be grateful you adopted him, or even show love at all. He may transfer all the pain he’s suffered onto you. The only reward you should expect is knowing you gave the child a chance at a future.

Most of these children were already given up on by their first parents. They were hurt, and the trauma and fear runs very, very deep. They are terrified… of the past and future, of being loved, of not being loved, of moving again, of life, of monsters in the dark coming to hurt them again, of giving love, of letting their guards down, of loving someone, of loving themselves, of never being able to love, of being damaged or unlovable, of being hurt again. That’s often why they have knives under their pillows. These children need intensive therapy and immediate help.

These traumatized adoptive families who have been pushed to their limits financially, emotionally and often physically need support. Giving the child back should not be an option ever — but – the state has some responsibility to these families they helped create. The state needs to pony up the resources instead of allowing/forcing families to give up on their children.

No, I’d never DREAM of sending my child “back” into the state’s custody, where a good deal of his damage occurred! I would (and have) however, kick down doors to get him the therapy, education, medication and other services he needs. Then kick some more down. You fight! You don’t give up on your child and take your story to the media looking for sympathy and pats on the back, exposing your child to the potential shame and ridicule of being "given back" or being "beyond help". You use that same energy and media exposure to fight for more resources and more HELP, not a way out. You make that goal very clear to the media. And especially to the child.

The Most Wonderful Time of the Year

2009-12-28T07:50:00.004-05:00

Well, I am happy...no... I am THRILLED to report that we had a fabulous, fun, joyful Christmas holiday! No meltdowns, no horrible behavior, no over stimulation (at least not to an unmanageable level), nothing bad at all. And boy did we push him to the limit: Late nights, travel, multiple parties and social gatherings, lots of extended family visits, unfamiliar people, and lots of chocolate and sugar and candy. And still, he was PERFECT.

My son tells me that this was "The best Christmas I've ever had in my life!" Oh yeah!

I have to say, it was one of the best I've ever had too. I went in not expecting much - and ready for the worst as the weeks leading up were simply horrible and so stressful - and came out stunned at how well everything went. The opposition is down to a small trickle, no rages, no meltdowns, no ugly names and replaced with a child who has been loving and kind and even a teeny bit snuggly -- and who even politely refused to eat a candy cane given to him by a friend, and instead hung it on our Christmas tree as it "has red dye in it".

My son is very, very, very proud of himself. And he knows how proud we are too. Whether it's the med change, a cycle ending, a break from school, the spirit of Christmas, or all or none of these is a mystery. But I like it!

Ahhh, the afterglow is wonderful and I'll be soaking it all up as long as it lasts.

Fa la la la la

2009-12-22T04:19:00.006-05:00

Yesterday, we had an "emergency" pdoc appointment. Christmas season has been rough on Dallas, and on us. So many PTSD triggers, over-stimulation, anticipation and change of routine for his little body and mind to handle, so he's had several bad episodes. His mania cycle has finally wound down some after a solid month (gah!), and now it's swinging to the other side into depression (with some suicidal ideation again). This is his pattern -- mania, depression then stable for a few months. His cycles always seem to run like that.

The 100 mg. Lamictal med increase has helped some, but not as well as we had hoped. His PT had previously noted that though his mania seems more controlled, his inattention and lack of focus is a real problem. At home, he is still explosive and oppositional and unfocused, and a bit...ummm...giddy..

In response to the Lamictal med increase not working as well as we'd hoped, his pdoc prescribed a newly marketed and FDA-approved medication for ADHD/bipolar called Intuniv. We begin a titration pack today, in addition to his Lamictal in hopes that this med cocktail will be the magic bullet that gets and keeps him stable. I hate to send him off to camp, where no one knows his issues or can monitor his moods/behavior, but praying it will all go well.

We enrolled him in sports camp for the Christmas break to help him get out his excess energy, still follow a "get up, dressed, and go" routine, and give me some much-needed quiet time alone. He seems to love camp so far. I told my husband I'd go without any gifts at all, if I had to, just to pay for the camp. It's that worth it. He came home happy, had a good therapy session afterwards, and went to bed happy, so that is wonderful!! Physical activity and sports -- strenuous and prolonged, really seems to help calm him.

Knowing me, I probably won't post another entry until after Christmas, so have a great holiday, and if you are dealing with challenges in your own family, I wish you PEACE, JOY and STABILITY. :-)

Merry Christmas!

At least he loves me

2009-12-10T23:03:00.007-05:00

Things are still rough around here, but hopefully improving...? We had a pdoc appointment on Tuesday and his doctor upped his dosage of Lamictal by 100%, from 50 mg. to 100 mg. Today seemed a bit better finally. Calmer. Easier.

Apparently, his recent mania cycle was triggered by both the holidays and my starting a new job outside the home. Even though I assured him over and over again that nothing would change for him and I'd still be there for him after school, for therapy appointments, and he wouldn't even know I was not home when he was in school, it affected him... and threatened his security. In a huge way. I am working as a teacher's assistant at a Kindergarten preschool, and he's terribly upset that I am teaching "babies" and not sitting here (at home) waiting for him. No amount of reasoning or explaining or reassurance could get him to understand that I am not forsaking him. Hopefully, in time, he'll get more comfortable. This particular job was one I chose BECAUSE it allowed me to be there for him outside of school hours. He's tried several times to sabotage me, and make me late for work so I'll "get fired". Sigh.

Hoping he'll begin to see that it's all going to be OK and no one is abandoning him. And hoping tomorrow is an even better day. Right now, I'm feeling like I'm giving all I can give and going in 10 different directions with PTA Board volunteer stuff, work, motherhood, special needs, therapy appointments, Christmas preparation, and being a wife. Poor husband gets the crummy end of the stick most of the time, so that's why he's last on that list. Thank God we had a night out, sans kid, on my birthday Tuesday. It was Heaven, and it's been ages since we had a night out alone with other adults for company. But boy did we ever pay the piper later that night with a big, ole meltdown rage when we brought him home from the babysitter. A craptastic end to a great night. But nothing we hadn't expected might happen. It's how we live our life now. We play, we pay. That's why we don't play much these days. Thank God me and hubby are a united front most of the time, and we already had many years together, before Dallas, to play. :-)

He's still doing great in school, if a little bit too chatty and distracted at times. No rages, no meltdowns and good grades. When I asked him how is it that he can control himself at school, and not call his teacher ugly names like "stupid" or disobey her rules, he had an answer for me rather quickly. He said, "Mom, I don't love my teacher, I only like her. I love you."

And that my friends, is how his mind works. At least he loves me.

Wish I had Magic Wand

2009-11-28T06:56:00.004-05:00

It's been almost a month since my last post. My, oh my, have things gone downhill...slowly, but still...

Either we are in a severely manic cycle and the meds are taking some of the edge off of what would a horrible and dangerous time, or they simply aren't working like they should. I have no way of telling which at this point. It has been a very trying 3 weeks or so, though. Lots of opposition, lots of high-energy behavior, very hyper and driven, although his behavior in school hasn't been a problem that we've been alerted to, other than a few days of "talkative" or "distracted" reports. He's still making straight As. Even his OT noted that nothing she tried could get his engine back down to a normal level so that he could participate in therapy. So we've been walking on eggshells once AGAIN, trying not to set off a violent outburst or rage, but still try to instill some sense of discipline.

He had an angry -- way out of proportion - episode yesterday after I had sat an old torch floor lamp out to the trash while he and his dad were running errands, and a neighbor picked it up to take it home. This lamp had stood in the corner of our family room, unused, for years, and was hopelessly out of style and was past time to go. I was just clearing some clutter out, getting ready to decorate for Christmas, and our neighbor spied the old lamp and rescued it as my guys were pulling up. When he and his dad parked, he came storming in the house yelling on and on about that lamp being "his favorite lamp", "it was special to him" and " how could I give it away", etc., etc.. and he got it in his head that he was going to the neighbor's house and taking the lamp back by force. We had to physically restrain him at that point, and he ended up beating the heck out of a trash can, and splintering an old wooden desk chair we had also sat out for trash, to bits, in the culdesac. My husband let him have at it to hopefully get his anger out, but it was scary to see. He did not once hit either of us (which is HUGE!), and eventually calmed down from exhaustion, and when there was nothing left of the chair to beat up any longer. I fear if he had not taken his aggression out on something, it would have been directed at us... specifically me.

One thing that we noticed was that he needed us to see what he was doing. He was aware of what he was doing, so it wasn't a rage. It was pure anger and raw aggression, but not clouded by some neurological misfire or seizure like his rages seem to be. He was "there" and he was MAD.

Then last night, he acted out horribly, was extremely oppositional, told me he hated me, wanted to kill me, was going to tell the judge to "fire me from being his mom" and that it was all my fault he was angry because I "chose him". All I was trying to do was get him to shower and/or go to bed, and he blew up at me. I've learned to pick my battles, so I left it alone. But he kept it going.

He then broke down sobbing for his birthfamily. (It's important to point out that he's never shed a tear for his birthfamily - even when he was first removed, but does suffer PTSD) In his sobbing, he said he did not care that they hurt him, that he still wanted to go back to them. He said he tells his friends he was "transported" from place to place and from birthmom to birthgrandma, then to us, and that's how he got here and that we adopted him, but said that his friends didn't believe him, and said he was lying and that he was born in my belly. Then he sobbed saying he wasn't and no one believes him. I tried to comfort him, he pulled away, with his face buried in a pillow, and he didn't want to be touched. He didn't have any tears that I could see, but lots of sobbing, almost forced-sounding, but was mostly hiding his face under a pillow... and then afterwards, claimed his "hands were full of tears". I asked to see them, and he said they were all dry now and that he wiped them on his shirt". I asked to see his shirt and he said it "dried too fast".. I'm not sure what he's feeling exactly, or if he's manipulating me and using his loss as an excuse to keep from being in trouble and knowing that it hurts my heart for him. But I am at a loss over his behavior lately.

Reaching for an answer, or anything to make him feel better and find some peace, I asked him if he wanted to write his birthfamily a letter, call or have a visit, and he said "not right now, maybe later on". The same answer we've been getting for some time now. I don't know what to think here. I wish this was easier. This time of year has always been difficult, but it seems more complicated than ever before, as his behaviors and apparently feelings are more complex than ever before. And the meds need tweaking. At least he hasn't hit me. But he's teetering on the edge.

Sigh...