Thursday, December 31, 2009
Soooo sleepy...
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?
Wednesday, December 30, 2009
Another adoptive family wanting to give up...
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.
Monday, December 28, 2009
The Most Wonderful Time of the Year
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!
Tuesday, December 22, 2009
Fa la la la la
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!
Thursday, December 10, 2009
At least he loves me
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.
Saturday, November 28, 2009
Wish I had Magic Wand
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...
Sunday, November 1, 2009
Wednesday, October 28, 2009
No kidding...
[Abilify and Risperdal are the only two of the four drugs approved as pediatric treatments, for the severe mental conditions schizophrenia and bipolar disorder — and in Risperdal’s case, for some children with autism. More than 70 percent of atypical antipsychotics’ use in young children and teenagers has been off-label prescriptions for nonpsychotic conditions like attention deficit hyperactivity disorder, according to Stephen Crystal, a Rutgers University professor who studies the drugs. ]
I would venture to guess since ADHD is often misdiagnosed for what is actually early-onset or pediatric bipolar, the pediatric ADHD patients being prescribed antipsychotic drugs were actually presenting with aggression, mania and depression, but not actually dx with bipolar disorder. The doctors were likely treating the symptoms, but not labeled the disorder beyond what was an ADHD dx. The article makes it sound as if parents and pdocs are jumping all over these medications for "non-psychiatric" behavioral/attention problems, when I am feeling certain that is not the case. So the public perception is going to be very skewed by reading this article. Where is the study on how many children are indeed bipolar, but being labeled as ADHD because the DSM-IV is light years behind in recognizing that adult bipolar presents differently than childhood bipolar?
My son is on Lamictal, which is an anti-seizure medication, also used off label, with a black box warning to treat bipolar disorder. It's not approved for children under 18 in the treatment of BP, but is approved for seizure disorders in children as young as 2. It also carries less of a risk of metabolic issues and less monitoring for physical side effects, which is why it was the first choice of my son's pdoc. It's not without it's own serious risks however (Stevens-Johnson), but it hasn't caused him to gain significant weight and has improved his quality of life - enough to keep him from being hospitalized. If the Lamictal ceases to be effective, we'll have to look to other medications - maybe even Risperdal or similar. I can say, having experienced life without a mood stabilizer for my child, I would take a weight gain and a rolly-polly kid (and the potential health problems that may come with that) over losing my child completely to a mental illness that caused him to think it was acceptable to tie a jump rope around his neck on his bunk bed, or throw a skateboard at my head. There's no easy answer for parents of children with serious mental illnesses and disorders that can potentially take your child from you or take away any chance at a normal life. You do the best you can.
I can't imagine that most parents take medicating their child with antipsychotic drugs lightly, but rather hate that they are forced to make difficult and scary choices that they and their children can live with. Surely most parents whose kids are on these medications are fully aware of the side effects, and hate that these medications have side effects at all, but they have no choice. It's either the risky medications or a psychiatric hosptial -- where they'll give them the meds anyway and maybe even dope them up to a point they can't function any longer just to stablize them.
A study like this comes as no suprise to most people who either prescribe, dispense, and take the medications. We know the risks. We also know the risks of NOT taking them. It does however, place one more misguided perception (we're over-medicating our kids, we are lazy parents, we don't want to deal with the issues, etc., etc...) on families who are already living with the stigma of a raising a mentally ill or neurologically-disordered child who needs medication to function.
Instead of studying weight gain in these children, why not take those dollars and instead fund a study to find a way to help them get properly diagnosed and treated and included in the DSM-IV?
Thursday, October 8, 2009
"That's the way I roll"
This was what my son said to me yesterday when I was gushing over his two Es (the 1st grade equivalent to an A) that he got on a spelling and a math test. Oh yes he did! It's a huge thing, but he acted like it was really no big deal. Deep inside, I knew he was beaming. ;-)
He is still doing fantastic so far this year in school as well as at home. He still marches to his own beat, but he's changed so much in regards to his behavior, his motivation, his self esteem and his progress in school. It's all finally come together for him and he often randomly says "I'm so happy, Mom", or "I love you so much" or other positive things out of the blue. He's finally feeling and knowing what it feels like to be happy, confident and stable for the first time in his life. Finally. He is on a roll.
Thank you God. Please let this last.
Saturday, October 3, 2009
More from Anita
We Can't Trade In Our Children or Husbands
Anita Tedaldi | January 04, 2008
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"Hard to believe, but a Dutch couple returned their adopted Korean daughter after seven years. The parents adopted the little girl from South Korea when she was 4 months old. Reports of how the situation unfolded were contradictory but it appears that the girl was given over to the care of the Social Welfare Department in Hong Kong, where the man is a diplomat, because they could no longer care for her. The couple explained that the girl was emotionally unresponsive and all attempts at therapy failed.
As an adoptive parent, really as just a parent, I can't justify this couple's behavior under any circumstance. I don't think these people are monsters, though the result of their action is monstrous because they chose to follow their selfish and unloving side instead of choosing to tough it out and love their daughter no matter what. Sadly, the impact on this child will be devastating.
Perhaps they had good intentions when they adopted, most likely they did, but something went wrong along the way. These parents were probably unprepared to deal with some difficult aspects of adoption. It's easy to imagine only the best of a new family member, just as we do with our biological children. No one envisions mediocrity, let alone problems. I have imagined perfect things in the past only to discover the road to family or marital bliss requires lots of hard work and an effort to practice unconditional love.
Anyone can have unrealistic expectation not just parents. It's easier to envision perfect little kids who excel in everything, or a flawless husband, an exciting job, but most of the times these things require hard work.
From personal experience I can say that adoption can be challenging. But so can a biological child who has issues, or problems in marriage, or work-related difficulties. When our adopted son Matteo started having health issues we had to consult several specialist and it was hard for him to be around his sisters, it became challenging. This doesn't mean that my husband or I ever had any second thoughts about adopting Matteo, or that we considered him any different than our biological children. My husband's intense deployments have been difficult for our family, but my husband never wanted to leave the military, and I never wanted to "exchange" him after many years of marriage.
Adoptions, friendships, marriages, even the military lifestyle, are easy when things are going well. But it's much harder when the going gets rough. There's a reason we say that character is revealed by trying times.
I hope this girl can find a loving family who can help her overcome her traumatic loss and that all of us no matter in what area of life we are struggling can continue to renew our love for children and families even when it's tough."
This blog entry was published just one or two months before she gave her own adopted child away.
Friday, October 2, 2009
Call me Judgmental
Unless the family's safety or the child's well being was involved in some serious way, I can't see disrupting an adoption... any adoption. Even then, I'd work to find a solution that did not involve terminating my long-term parental relationship forever. It takes a huge amount of courage for a mother to place a baby for adoption and recognize that she's ill equipped to raise the child. But for an adoptive mother to go through an adoption process and raise an infant child for 2 years, then give it up because she hasn't bonded? I will not understand that. I don't even want to.
She's justifying her reasons publicly, and assuming no responsibility for what she's done and treating it as if she's given him some gift by giving him away. She makes no apology. She makes it appear as if it is the baby's fault. The burden is on the parents to try to make it work and put the time in to do so, the burden is not on the baby to bond with the parents. She comes across pretty cold about it. And talks of her feelings towards him in the past tense. As a temporary thing. Even birthmothers who placed babies, and moms who had children die, don't stop loving their children because they are not raising them or never had a chance to. Love is something you carry in your heart forever.
She comes across as very self-centered in her blogging. She wanted another baby, she wanted to "adopt" and she brought a special needs child into a family with an absent dad and 5 young siblings already. That the children sat there watching Sponge Bob and absent-mindedly said good bye FOREVER speaks volumes for how that baby was integrated into their family after 18 months. We fostered an 18 month old for ONE WEEK as an emergency placement, and had Dallas for only a few months himself (with attachment issues), and he sobbed his little eyes out in saying good bye. That's the day we decided that we had to put our license on hold and focus on him.
That family has some problems that go way deeper than mom not bonding with baby. She admitted it was only a few months into his placement and she was ready for him to go. A few months is a drop in the bucket and bonding can take time. If your mind gives up early, your heart is never going to follow. I hope that the little guy thrives in his new family, and I'm glad he is hopefully with people that know how to work with attachment and bonding issues. But... newsflash... It WAS NOT HIS FAULT. He was not defective.
It is kind of a sensitive issue for me. I'd never willingly give up any child I loved, no matter what the issues, so I cannot relate to this mother at all. She just pisses me off.
You know, bonding (to me) isn't even about hormones and visceral connected-ness, at least not right away. It's about learning to love another human-being as much as you do yourself, if not moreso. Loving a child is supposed to be about giving of yourself unconditionally, not about whatever rewards may come out of it.
Biological, step and adoptive parents don't always instinctively bond right away. Even some fathers don't until some time after the mother does. It takes time. With a challenging or hurt child or baby, maybe even longer. Maybe some don't ever bond as deeply as others do, but they still love and care for the child they are raising. Committed parents hang in there, and most fake it til they make it, and are happy enough for the internal rewards that come from caring for and loving a child and watching him or her grow and learn. When my son finally connected to me as his mom and bonded to me, it was my biggest reward. It didn't come right away, and I WORKED hard at helping it to happen. It is still a work in progress.
I think this lady expected more of a reward -- more intense feelings toward and from this baby -- than she received right off. So she gave up.
I don't know how any mom with two small infants already, no matter how maternal she thinks she is, could possibly think she'd instantly bond with a special needs 9 month old she's never met. Or expect to put the time in that is necessary to help the child bond with her. Why did she even adopt? I don't get it.
Any why are agencies not educating and thoroughly screening potential adoptive parents about attachment and bonding issues in adoptive children, and providing support afterwards?
Why was this baby failed so miserably during the most critical bonding period in his development? Has it become so fashionable to adopt from overseas that parents and facilitators are ignoring or downplaying the very real issues these children face, in favor of some pipe dream of instant gratification, be it parenthood or money?
It makes me angry and it makes me sad. At the same time, I am relieved that this mother didn't hold onto a child she says she loved, but couldn't love as her own.
It's just so sad. But she gets no sympathy from me. I've worked damn hard for my motherhood.
Monday, September 21, 2009
Braggin rights!
In general education he received:
S in communications
S+ in mathematics
S+ in social growth and development
NO absences
NO tardies
NO flipped color cards
In his IEP goal/SLS progress report:
1. 2 of 2 Benchmarks - Dallas partcipates in all activities! Making progress - expect goal completion.
2. 2 of 2 Benchmarks - Dallas works very hard in the resource room! Making progress - expect goal completion.
3. 2 of 2 Benchmarks - Good Start! Making progress - expect goal completion.
4. 2 of 2 Benchmarks - Dallas is very successful in his homeroom class! Making progress - expect goal completion.
We are SO freakin happy and proud of him!! And so thankful for good doctors and good therapists too.
Just had to share brag. ;-)
Friday, September 18, 2009
Hurt and Hugs
This is extremely troubling, particularly since we were aware (and made his pdoctor aware) that there was a biological history of bipolar disorder, depression and alcohol/substance abuse. The indicators were there, but I fear this old doctor is also "old school" regarding the possibility that young children can have bipolar disorder. This was the same doctor who prescribed a tricyclic antidepressant, on top of Ritalin, for his suicidal ideation, rather than consider bipolar disorder, and the danger of prescribing antidepressants to a bipolar person. From all that I've read and researched, and given that there is a biological history of BP, a doctor must assume bipolar disorder is a possibility before giving a child or an adult antidepressant, and not assume they should the first line of defense against depression.
I'm am so grateful that my own mommy instinct kept me from giving him that medication, and that research pushed me to seek out another psychiatrist. The old doctor? Is still diagnosing and despensing medication for children in DCF custody and residential treatment facilities and group homes in particular. Scary.
We had our first set-back since starting Lamictal, last Friday evening. It was pretty awful, and the worst of the violent rage lasted about 30 minutes and ended in an episode that can only be described as a PTSD "flash back" and emotional break down as memories came flooding back. It was absolutely heart-breaking. At the same time, it is also something to feel more positive about as he is finally beginning to recognize and verbalize these awful memories and feelings and each time is another break through. The events that happened to him when he was pre-verbal are just now begining to surface as triggers, and be verbalized as memories. If only we could find a way to help him purge them. He's just barely beginning to understand them at this point, so it will be a long road. :-(
That episode was far removed from how things have been on Lamictal, and for that we are very grateful. We believe it was triggered by tiredness, which triggered aggression, which triggered memories, and on it progresses to the meltdown point... Our focus right now is to try and ensure (somehow) that he gets a good night's sleep -- which hasn't been occurring with multiple wakings in the night. He seems to be back on track though.
A really great thing happened at a school event I was working at last night, however. For the past year or so, Dallas has been too embarrassed and cool to hug or kiss me good bye or hello in front of his friends at school. The most I usually get is a very slight "I love you" hand sign down by his side so only I see it... hehehe.
Last night at this school event, he walked up to me several times, without any prompting whatsoever and hugged and hugged me and said "I love you so much Mom". Right in front of his friends, students, parents and the whole world! One mom even remarked to me that was something you don't see every day, and she was glad to see that some boys still did that to their moms in public, and how sweet and loving he is. It was so nice and just melted my heart.
I was just beaming inside. And secretly?.... I kind of laughed to myself thinking, you have no idea that he kicked me, threw his DS game at me and told me he hated me 3 days ago, so this public display of affection among his peers was pretty MAJOR for him. And for me.
He told me later he did that because he wanted to prove to me how much he loves me and that he doesn't mean to say and do the mean things he does. Pretty profound for a 7 year old with so many mixed up emotions to even look beyond his own feelings and needs.
I know he really does love me. I so wish I could find a way to make the pain, hurt and torture in his mind stop. All I can do is show him I love him, and keep looking for answers.
Wednesday, September 9, 2009
Teach a Man to Fish....
Monday, September 7, 2009
"You're stupid, Mom!"
Can I say how happy hearing this (in comparison anyway) makes me, without letting my kiddo know, and without sounding...eh...STUPID?
In a typical household, a child calling a parent "stupid" would be the worst of the worst. In my house, it's nearly a gift.
Seriously though, my husband and I came to the realization last night that since being on the right medication, our son is looking more and more typical of a normal, albeit slightly oppositional, spirited 7 year old boy. Everything is tempered down and on a more even keel in our household. It's more like living with an ornery teenager at times, but that's manageable, and hopefully just an early preview of things to come. Not only that, he is also quick to apologize and show remorse. REAL remorse, and real emotions, not the forced and fake attachment-disordered brand he once gave us for show. The frightening lows and violent highs don't exist right now, and that's making life so good for everyone, especially for our son. His teacher reported that he's having NO issues in class and has had perfect conduct for the entire two weeks straight that school has been in session. And NO ADHD meds still! Surely she thinks the intro letter explaining his special needs we gave to her was all made up, and she gave me a look like I had two heads. Dallas? Why he's doing perfect in class. One of her best kids. Wow. At home he's laughing and smiling and enjoying life with his usual enthusiastic zest and infectious personality and smile, with just a sprinkling of dare-devilry and mild opposition thrown in to spice things up. I can totally do "stupid" if that's the trade off for having my son be a normal kid.
Matter-of-fact, I think I'll embrace my stupidity today. In my family, that apparently means all is right with the world. :-)
Happy Labor Day everyone!
Sunday, September 6, 2009
Boy Interrupted
Wednesday, September 2, 2009
My oh my, what a wonderful day...
So, to those people who have harsh criticism for parents who choose to medicate their young children and even label us lazy or ineffective parents, I say, look at this face:
This is the face of a child who has struggled so long to feel good, and to feel good about himself and is finally getting there. With proper medication and good therapy, he is finally getting to that impossible place he's worked so hard to find. And it shows in every smile, every moment of every day where he starts to fall into that hole, catches himself and manages to pull himself back out before he gets to the point of no return, mostly all on his own. This is not to say that his, or our struggles are over by any stretch of the imagination, but we are in a "good place" right now and we will relish in it as long as we can.
I love my son. And I am so stinkin' proud of him. I can tell him all day long how I feel, but one day, he'll really understand what that means. But for now, it's enough that he is proud of himself. Actually, it's everything...
Sunday, August 30, 2009
Multiple Transitions
Why we can't give up advocating for children at risk. Ever.
Wednesday, August 26, 2009
So far, so good...
Last night was the first indication of serious stress in weeks, as he got oppositional right before bedtime, and we witnessed a meltdown that included yelling, disrespectful words, breaking his toothbrush and throwing a bean bag chair, and refusing to go to bed, but no physical aggression towards us as in the past. We maintained an air of calmness, and monotone throughout, simply repeating, "we're not yelling, we're not angry, don't be angry, take a deep breath" and then I had an idea. I thought to ask him quietly if he'd like to be brushed,
I can't wait to tell his Occupational Therapist and his Behavioral Therapist how well just the SUGGESTION of brushing worked to divert a full-on meltdown rage! One more tool in our arsenal against the brain monster.
.
Monday, August 24, 2009
First Day, First Grade
("It's MY hair mom, not yours...I can do what I want with it!") which means raking a comb over his hair with two strokes... sigh
Backpack and supplies gathered up and out the door. At first, he refused to have a picture taken
so we got in the car. I've learned to pick my battles first thing in the morning. We had to park nearly a quarter of a mile from school, and walk the rest of the way as cars had over-filled the parking lot and spilled out down the main entrance roadside.
No problem walking plus gave us time to talk a bit, and Dallas was super excited that he was getting to finally "walk to school". Excited enough that he let me take a picture and he was grinning.
We saw a dead flounder in the creek along that way and that was a distraction off our destination for a few minutes... and I stepped in dog poop which was terribly funny to him. :-/
Click on people's faces in the photo to tag them. |
A little silent drama over that, then a hug (no mom kisses as that's too "embarrassing"), and I told him I loved him and walked away. He really seemed to be OK.
The anxiety and stress was obvious to me, but not nearly what I had expected. He did very, very well! It was one of the easiest school mornings and transitions we've ever had! Go Dallas!
Here's hoping he had a great first day!
***Edited at 10:45 pm to say YES! Yes he DID have a great day! No ADHD meds all day, good behavior, a great day (to hear him tell it) and then right from school off to OT for an hour, and he did great there as well and was able to sit still and focus on his tedious and challenging puzzle tasks way past the 10 minutes that was expected of him. His OT was just praising and praising him. I was so proud of all he accomplished today, we went by McDonald's on the way home to treat him to an ice cream sundae and some playland time before going home. Tonight he ate a great dinner, showered all on his own, followed directions, and went to bed ON TIME with no fight... Just a few BRIEF moments of meltiness here and there, but quickly self-diffused by Dallas himself, and immediately apologetic. Tonight as I put him to bed and read a story, I snuggled with him, and told him how darn proud I was of him, and how much I love him. He was already half-asleep in my arms. It feels NORMAL around here. Today anyway...
I think I must be dreaming! :-)
Tuesday, August 11, 2009
Happy Dance Time
I told him today that it's only a couple of weeks before school starts again, and asked what has been the best thing about this summer and he said "Two things. Spending lots of time with you (yay!), and dad taking me deep sea fishing."
My husband even felt brave enough to take him out on his first deep sea fishing trip this past Saturday. I was worried the entire day (that's just what I do no matter what because I'm mom...), but he was perfect all day, and everyone was very impressed with how well he handled himself. He was the only kid with 4 men looking out for him, so we couldn't have set it up any safer. We had to give him a chance to go and hope for the best. And he shined! This is the best he's been in a long long while.
So... all in all, it looks like we are on the right track with the meds. We had a pdoc appt. today to assess how these meds are working, and figure out what to do about school/ADHD meds, and we've decided to NOT give him any ADHD meds for now and to see if the original ADHD diagnosis might have been wrong since discovering the bipolar medication seems to be helping in regards to anxiety, depression and aggression. Imagine that! Only time will tell how he transitions back to school and if he can cope in a classroom setting with no ADHD medication. Look out school!
His doctor is very pleased with how well he's responding to the Lamictal, and has decided to keep his dose at 50 mg for now. That's a good sign as the usual dose is double that. She also told me that he was "golden" in her office today, and showed no signs of hyperactivity, impulsivity, or inattention. She said he was "night and day" compared to how he was at our last appointment before he began the bipolar meds. I am just so happy I could do a happy dance. And to think how terrified I was just 3 weeks ago...
He's also saying he is excited to go back to school, and meet his new teacher, and non of the negative "I hate school", "I'm stupid" stuff from early summer or any anxiety that I can detect, so hopefully his summer's been long enough too. LOL.
His OT is using a lot of sensory tools and he seems to be responding REALLY well to those... brushing, joint compressions, weighted lap pads, etc.. and they've been working on handwriting and motor skills, and she said his attention span has been better the last couple of weeks! Who knew that OT could help him so much to relax? We are working on determining what of those tools would be helpful in class and get them added to his IEP.
So, all in all, things are going FABULOUS so far. I think we are finally on the right track... and I am so grateful.
Wednesday, July 29, 2009
Hitting Home
Once in a lifetime though, a book may come along that will ring true and change your life. The Papalos' book, The Bipolar Child, was such a book for me. Every paragraph and nearly every chapter I read, from cover to cover, had me repeating to myself, "Oh my God, this is my child!" It was as if the door had finally opened and SOMEONE understood and acknowledged what we live with everyday. It has a name!
Childhood Bipolar Disorder.
With that revelation though, also came nearly paralyzing fear. This is not simple ADHD or anxiety or adjustment disorder as was previously diagnosed. We aren't going to Ritalin or therapize this away. This is a full blown psychiatric disorder, that can cause children, sadly, to take their own lives, and the younger age the symptoms manifests, usually the more severe a disease it is and will become.
We have finally found a psychiatrist who treats children with mood disorders and willing to, conservatively, try out mood stablizing medication. It's already been a long rough road searching for an answer. It may get even longer. And rougher.
While we wait, watch and wonder if our son's life and our family dynamic will stabilize, it's helpful to reaffirm some things that we already know, but sometimes forget as we are walking on eggshells and shielding our son (and ourselves) from the disapproval and ignorance of the world as best we can.
We might suffer alone, but we are not really alone. Here is an excerpt from a newsletter written in honor of mothers and fathers of bipolar children. For those of you who wonder what it must be like to parent a bipolar child, or parents of bipolar children who feel as if NO ONE understands, the Papalos have once again, hit every mark. This is our life. Is it yours?:
- Look at a very young and much-loved child with a nagging fear that something is seriously wrong.
- Feel the external world bearing down on them, advising them to take multiple parenting classes or to tune into Nanny 911. Feel infantilized and ashamed as people offer up criticism and advice.
- Accept that they need help from a professional, but feel a stranglehold of fear.
- Come to learn that there are only 4,101 child psychiatrists in the entire United States--many wary of making this diagnosis.
- Watch their child and other siblings besieged by an illness for which there is little diagnostic or treatment consensus in the field of psychiatry.
- Receive multiple diagnoses such as ADHD, OCD, ODD, PDD, anxiety disorder, or simple depression.
- Come to accept that the child has a very serious psychiatric illness and make the agonizing decision to begin a trial of medications (if they can find a psychiatrist who can treat their child, or who has open hours).
- Read the package inserts of medications which list possible side effects, as well as frightening black-box labels, and watch apprehensively for any signs of serious trouble such as lithium toxicity, tardive dyskinesia, Stevens-Johnson syndrome, new-onset type-II diabetes, or pancreatitis.
- Attempt to explain to a child how the doctor is trying to help and what the medications are going to do; subsequently they watch their child experience distressing early side effects that include nausea and diarrhea and severe drowsiness; or worse, the paradoxical effects that produce the opposite reaction of what the drug is being used to treat.
- Deal with the disillusionment of a failed medication trial and explain to that child why those pills didn't work and tell him or her: "We're going to try something else," knowing that they may have to repeat that phrase a number of times and thus begin a new round of side effects.
- Have to get a child who has a needle phobia to a lab for a blood draw to determine drug levels. (This experience alone could turn one's hair grey.)
- Watch children's weight balloon upward and their self-esteem plummet as they take certain medications that can be very effective, but that may also cause weight gain.
- Become an all too familiar face at the pharmacy, experiencing shock at the cost of each prescription.
- Have to suffer the ignorance of people in the media, who--in a cavalier manner--discuss over-diagnosis and over-medication. Moreover, these parents hear certain clinicians in the field publicly utter insulting sound bites such as: "This is an easy way for parents to let themselves off the hook;" or "This is simply the diagnosis du jour."
- Have to listen to the word "No!" from a child one hundred times each morning, but be unable to assert the parental "No" as it will predictably trigger a meltdown.
- Suffer the physical abuse of a child raging out of control, and experience crippling shame because they can't manage their own child.
- Are set adrift in a house that has become a war zone.
- Deal with feelings that alternate from extreme anger at the child to the most unbelievable yearning to help that child, from anger at the outside world for failing to realize what is happening to them, to exhaustion in trying to deal with the child with some modicum of equanimity.
- Become perplexed that their child often does well in the outside world, only to return to the safe harbor of home to rage at a parent (most often the mother), leading to the suspicions of outsiders that "Something must be going on in that household, and with that woman;" or "She seems so nice, but you never really know people;" or "He can keep it together at school, so he must be a very manipulative kid.
- Have to mount a siege each school-day morning simply to get a child suffering a sleep/wake reversal up and out to school.
- Hesitate to answer a phone, afraid that it will be the vice-principal in charge of disciplinary action calling to report an "incident" at school.
- Come close to earning a degree in educational law so as to work with the school system. Keep in constant contact with the teachers and psychologist or aide in order to assess what's working and where yet another accommodation may help.
- Waylay careers and reduce household income so a parent can stay at home to deal with the child and spend hours at doctors' and therapists' and tutors' offices.
- Experience the heartbreak of knowing that their child is rarely invited to birthday parties. Conversely, if he or she is invited, the event might be overstimulating thus provoking some kind of meltdown, and effectively putting an end to any such celebrations in the future.
- Fear that their child will become aggressive with kids on the playground or in the neighborhood, thus earning disdain and a cold shoulder from the other parents.
- Want the world to understand, but fear that the stigma will further isolate the child and their family.
- Attempt to explain the almost inexplicable to the siblings, and to help them cope with the chaos in the household. Feel overwhelming guilt that the family is always fractured as one parent goes to a soccer game while the other stays home with the unstable child; or that a rare dinner at a restaurant devolves into an embarrassing, abruptly-ended event as parents race the child and siblings home and away from disapproving diners.
- Are paralyzed if a child becomes manic and hypersexual and says inappropriate things or makes inappropriate gestures.
- See their marriages become shaky as the stress of coping with this illness leaves parents little time to relate to each other and most conversations begin to center around the problems of their ill child.
- Listen with horror as their child screams, "I don't want to live anymore;" or "I'd be better off dead."
Friday, July 24, 2009
Welcome to Bipolar World
Can I say again how much I hate giving him meds? I hope this one, and a new rx for possibly Strattera (non-stimulant) by the time school starts will be all he needs to feel normal and function normally. Last night, he slept through the entire night without waking, and is still asleep now at 9:40, but didn't go down until almost 11 pm.
We likely won't be able to see an endo for months for the newly-discovered hypothyroid issue. It's appalling, but his endo needs to be a pediatric specialist, and there are two in our entire region, and both backed up for up to a year with appointments.
Today's a brand new day. We'll see how it goes...
Wednesday, July 8, 2009
Season of change
The pressure of school is over, and boy what a change in my son from just a month ago! His behavior has begun to look "normal" and he is happy most of the time. It may be just a coincidence and timing of his mood cycles, but my instinct tells me it's more than that. It's as if he's turned an emotional corner of sorts. He is after all now 7 years old, and "mature" as he likes to say.
We celebrated his 7th birthday on June 20th with a bowling party with 8 of his best friends and our extended family, and even a few neighbors joined in. He made a special request that I bake him a "Florida Gators bowling cake with a bowling ball on top". Do what? I am most definitely NOT a baker by any stretch of the imagination, but I did my best. It took me 5 hours. Did I mention I am not a cake baker?
He loved it and that's what mattered.
Dallas is also swimming like a fish this year, and has begun trying to dive... err.. belly flop. He no longer has any fear of the water. We may have another Michael Phelps on on hands!
However, the best part and biggest change is that he can just chill out and enjoy the summer for the carefree time is is supposed to be. Once, where without any structure, he completely fell apart, he is now able to thrive and be flexible. And also relax a bit...
Fourth of July, however, was too exciting for words. Dallas was all about the fireworks. Obsessed by fireworks. My husband tells me it's a "boy thing", and that we aren't raising a future pyromaniac. I guess he'd know, since he spent way too much money of fireworks himself, and it was like watching TWO excited boys, instead of one.
One of the biggest changes however, is that we took him completely off his ADHD medication. It wasn't without worrying about how he'd cope (and us as well) but he's done GREAT. His attention span isn't too great, and we often have to repeat ourselves 3 or 4 times, but his behavior has been manageble, and he's not been so impulsive as to be a danger to himself. Well, not so far anyway.
The other really big change, is that he's begun to cry when his feelings get hurt or he's sad. It sounds like such a simple, normal thing that kids do (and most parents try to prevent the tears!), but for Dallas, it's a huge, positive thing. At first, we were very concerned that he was going into a deep depression cycle and the new-found crying was a warning flag for that. But as time has gone by, we realize that he's instead begun to be able to identify and express appropriate emotions that match his feelings... and feel safe enough to CRY. Understanding his own feelings and emotions has been a 3 year struggle for him, but we do believe he's finally turned a corner. He never even cried about being taken into foster care or losing the people he loved. He confused "mad" with "sad" and it's been a difficult, often volatile journey for him, and for us.
We are so incredibly proud of how far our son has come on the road to healing!
Friday, June 5, 2009
Letting go
My son has a particularly hard time saying good bye to anyone he's grown to love. When he loves, he loves deeply. Today, on his last day of school, he's saying good bye to his teacher. She's been a presence in his life for 9 months, and this is a very difficult day for him.
Yesterday, we were shopping for craft supplies to make his teacher a gift for him to take her to show our appreciation. While out shopping, he found a tiny paper weight-style heart, with colors swirled inside, like a marble.
He insisted that he needed to get this for his teacher. When I reminded him that we were making her a flower-pen bouquet, he said we just had to get this too. He then told me that he wanted to do this because, "the colors swirled inside the heart are like mine and Mrs. Robertson's hearts swirled together forever. She will always remember me by it". Wow.
Well, today, on his last day of school, he took the flower pen bouquet we made for her, AND the tiny swirly love heart he chose. And votive candles he also picked out and insisted on, because according to Dallas, "girls love candles".
I hope his last day goes well and he finds the closure he desperately needs, and has sought all on his own. I am so, so proud of my son!
Thursday, June 4, 2009
Roaring seas, then gentler waves
I had to do something several weeks ago I never thought I would ever be compelled to have to do. I had to call the police on my 6 year old son -- in order to protect myself, and him because of a violent rage. It broke my heart to bits, but there was no other answer to the violent rage that lasted for hours, with no sign of de-escalation without some outside intervention. He calmed down once the officers arrived to talk to him, and seemed genuinely remorseful, but scared also. He's scared of his own behavior that he knows he has such little control over. He's come miles, but he still has got so much further to go in getting a handle on the anger, fear, hurt and the trauma that was wired into his brain and captured in his heart from infancy until he came into our family. This last month was rock bottom for all of us.
But that's the thing about hitting rock bottom. There's no where else to go but UP!
We are having a much better couple of weeks now, school is nearly out, and the world has not rolled off it's axis yet.
He's finding new ways to hopefully channel some of those feelings - though ongoing therapy (his wonderful therapist is a true life line at times), meditation (just beginning this) and now, OT. Our next thing to try is EMDR therapy. I've heard some promising results, so we keep our eye on the prize.
While we desperately need help him find ways to get a handle on all his painful emotions and the violent behavior, I need to let go of my own suppressed anger at all (people and situations) that have caused my little boy to suffer like this.
He deserves better.