Wednesday, October 5, 2011

Life Altering Days

So I haven't posted since June. Yikes! Although...not like a lot of people noticed! :) So much has happened...a lazy summer; a new homeschool year begun; new dance teams; new sports teams; new, so much. But really, nothing really life altering. All things that could be caught up quickly, over a cup of coffee. Until today.

Because of today, our family's life was altered.

Some background info...Ben has been struggling this past year with severe negative emotions. He has been sassy and obstinate; he has called us names; he has threatened to call 911; he has asked for a new family; he has refused to eat, to sleep, threatened to run away; he has said he hates his sisters; he has said he hates us; he has said (more often than anything else) that he hates himself; and three times, he has expressed the desire to die or to kill himself. He's 10, by the way.

There's so much in this that's relevant. First, he's my mini-me...dramatic, emotional, deep thinker, argumentative, self-focused, a bit manic. Second, he's been parented in the past in a very reactive manner, with our emotions often winning over common sense, so he reacts differently to things than the girls do. Third, he's a boy who is encroaching on puberty. And finally, he has been in trouble more of his life than not. I own what parts of his current problem are based on poor parenting choices I have made. I have taken steps to rectify those and back in June, Ben started counseling again with Teddy and I attending as well (same counselor Ben had when he was 5 and 6).

After about 5 sessions, we didn't see much improvement or have ANY feedback from the counselor. Also, over the past 7 years, I have been conversing with Ben's pediatrician about his tics and school challenges, only to be told it's all normal. Two years ago, I discovered Sensory Integration Syndrome and Tourettes, and went armed with evidence that I think my son has both those as well as possible dyslexia...only to be poo-poo'd by both the pediatrician and the counselor. So, I chose to address the sensory issues at home, but left the dyslexia and Tourettes alone for now. Well, after realizing these counseling sessions were a waste of time, and after a particularly hard night (Ben woke me up at 2am, yelling that he didn't want to go to summer camp and he wanted to die, and it took 4 hours to calm him down), I decided to seek out psychiatry. At this point, a friend in the medical field suggested that Ben was showing symptoms of bipolar disease, which happens to run in both sides of my family to some degree. So, in August, we were given the soonest appointment with my second choice psychiatrist...October 4th.

Today, I considered skipping the appointment. He's been doing better, and I've been more consistent in our school routine which has helped with a few of the issues. He hasn't muttered anything about death or hate since August, but bedtime every night is a nightmare. He still can't sleep well; food is still a battle; he still bullies Sophia over the little noises she makes and the odd things she does that irritate him; and he still is lacking in self-confidence. So, we went.

He was scared and nervous. After I shared the gist of the last 10 years and Ben shared where he struggles the most, the doctor began to talk about medication. I was a bit ticked off, thinking, "I knew it, you're one of those doctors...running a pill palace, practically giving away prescriptions and rolling in the bucks." He said the pills would be for Ben's tics, that he could make them almost completely go away and it might help Ben have the mental capacity to cope with life better, since most kids with Tourette's struggle with tics, focus, short fuses, "crisp" personalities, sensory issues...wait. WHAT?

"Who has Tourette's?" I ask. "Ben?"

"Yes, hasn't he been diagnosed? He's a clear cut case. Vocal and motor tics, lasting over 6 months, that are migratory."

"But I asked his pediatrician, for 2 years now, and was told no way, that it's just a normal part of boys and growing up and he'll grow out of it" My Momma bear was getting riled up and it was either going to be directed at this psychiatrist or at our (now former) pediatrician.

"It's Tourettes, without a doubt." He went on to explain how all of Ben's challenges fall under this umbrella; how he will most likely grow out of it but the medication will help take the edge off for him so that he can sleep better, and slow down his "short fuse" so he can think through his actions better, help him obey us more and be nicer to his sisters just because it helps slow down his adrenaline reaction, and that we would combine that with talk therapy with a female counselor in the office (who also has a dog, which really helps Ben relax).

Now, don't get me wrong. I'm not a fan of medicating kids, and I don't plan to share publicly what he's on because, for whatever reason, people like to judge me and I figure I'm already giving enough fodder to cast a few stones. But, to hear that my son actually has a reason why he's been so prickly his whole life, and to see him get some relief from these emotions and movements, about which he has said "I just can't control myself and I hate it"...for this, I am willing to try the medication and see if it helps him just a little. He needs some hope, and this family was quickly running out of it. Madeleine and Sophie cry themselves to sleep most nights, because bedtime is when the fighting is the worst. School was becoming impossible because it was always a fight. Car rides were a nightmare, because he would yell and complain the whole time. And quite frankly, my son was getting awfully hard to be around, and I hadn't used the word "fun" in reference to any activity he's part of, in a very long time.

I don't share a lot of this with many people, and between this and some health issues I've been having (blog post for later on), the past year especially has been a challenge in ways that are hard for some to understand. I've asked for advice on how to deal with Ben's behavior and had well meaning friends tell me things like, "You feed him junk, change that and he'll act better" (because my organic apples and whole wheat bread and no candy and almost no fast food was all junk, right?) or "It's because you let him play video games and read Harry Potter" (not sure if 20 min a day, if that, of video games has that much power...and he's finally reading, praise the Lord, so I won't go there) or "It's all spiritual, you need more church and more prayer" (more prayer is always a good thing, not so sure on the more church yet)...anyway, you see my challenge. We have read every parenting book, tried every tactic, been accused of bad things and judged for good things, tried nutritional approaches, prayed, begged, researched...only to still have crying kids at night and terrible feelings of despondency all around. I have felt very alone and have quit sharing my struggles with most of the people I'm surrounded by, because of this. I have felt like no one understands what it's like to have a child who's just off a bit...not enough to necessarily require special help, but just enough to make life hard...that's Ben. Always been a little out of sync, a little disconnected, a little lost. My heart has always been broken for him; broken by him; and done some of the breaking as well...perhaps today, this will start to change.

To have a diagnosis means I can begin to help my son heal, be empowered, to cope. There's a lot to learn, a lot to process. We've already had a few deep talks, focusing on the fact that this is something you have not who you are, and that in lots of ways, it makes him very unique and special. He asked if he can tell people because he gets made fun of a lot for his tics, and he surprisingly gave me permission to tell whomever I wanted as long as it wasn't his friends because that's his job to share. :) His sisters sang him a song (I think something from Seussical) and cried a little.

Anyway, I share this with you few who read this, because I would ask for prayer (if you are inclined) or advice (if it is non-judgmental) or positive support in any way, as we explore this new area. It's scary, giving my son a pill that could change him, however temporarily. It's also scary to "own" this disease. But within this fear, I'm finding relief, and hope, and power. I'd love to have you walk this journey with us and share in the blessings I'm sure will reveal themselves to us.

And perhaps, this writer's block will take a vacation soon.


Amy D said...

Oh, Stacie. You have certainly been through th proverbial ringer. :-( I truly hope that this is a step in the right direction and there can be improvement in your family. I know, all too well, the living hell, that one kid can bring to your family.

wakefield said...

That's fantastic. The Number one, amazing thing, is that he will probably grow out of it. What a great thing to hear. And I commend you for getting him help. And if you try the meds and you don't like it then you try something else. If I thought it would truly help my child, and I'd tried everything else, I would try medication in a heart beat. And I'm definitly with you on thinking most dr.'s just want a quick fix. I've worked with children most of my life, and I've seen tons on meds, but only a very few who I've thought actually needed them. But with the symptoms you've described, it sounds like this could truly change his life, and that of your families. Last year I worked with a child who really struggled, and her parents, after every other effort, put her on meds. Let me tell you it was one of the most positive changes I have ever seen in a child and a family.
Although your friends and family probably have your best interest at heart, they are not professionals. They repeat what they've read or heard, this diet, or that parenting technique, and there is nothing wrong with trying those things, but the only advice I would take is that of a true professional. Sounds like you've found one. Good luck.

Val H said...

So glad you finally found answers! I know this has been a long struggle for you guys and so answers are so amazing! Can't wait to see how this changes things. And I hope you told your ped doctor that he had missed it. Seriously frustrating. And Riley would love to hang with Ben sometime and talk Harry Potter. Hugs! Can't believe we haven't seen each other in so long! Praying for you guys!

Ricki Rodriguez said...

Stacy! My heart is breaking for you and rejoicing for you, as news like this is earth-shattering. We know from up-close-and-personal experience the mixed up feelings you may be having right about now...fear for the future, RELIEF that you as a parent are not insane, there really is a reason, trepidation about medicating your child - what if it makes things worse? When my daughter was (finally) diagnosed with bipolar disorder, we ran the whole gambit of emotions, and still do some days. My prayers and good wishes are with you, my friend. Please know that if you ever just need to talk, I am here for you.

Dana condrey said...

Proud of you. No parent likes to give a child pills. However, a chemical imbalance cannot be corrected by any amount of prayer, church, patience, or discipline. Be patient with the process though, it could take time to find the right med and dose. You all have suffered long enough. You have done the research, trust yourself. My heart is so happy for Ben. Finally, someone is helping him cope, truly seeing his reality, addressing the problem, instead of laying blame on mom and dad. Imagine what this will do for his confidence! I am hopeful Ben will start feeling more comfortable in his own skin soon. Great work Mom! You are advocating for your son, don't listen to the negative feedback of others. No one has walked in your shoes or Ben's for that matter. Will be thinking of you, keep posting updates!

Heidi =) said...

((hugs)) I love you and I am so glad you found the answers you have been searching for!

Di said...

I applaud your bravery. You are doing all you feel is best for Ben & that should be MORE than enough for anybody who truly cares about you. Sometimes we have to make a stand for our kids against people who should stand behind us- it sucks, for lack of a more eloquent word- but what other choice is there? Should Ben be traded in for an "easier" kid? Should you send him away to boarding school? How much "more" or "better" do you think you & Teddy could possibly do or be?! You guys would go to the moon & back for him! That's obvious to anyone who spends any kind of time w/ you at all! I'm sorry for the hurts you've carried. I'm happy for you that you have a direction. No, it won't make Ben the same as anybody else (who wants that anyway), but at least you guys now
have hope for him to be the best Ben he can be. Our family will pray for yours- because WE know that not all of our kids are "pleasing" to those around us, but they pleasing to the One who made them, and His opinion is really the only one that matters.

Tarey said...

Ben is going to be fine. The true difference in his healing is not the pills but his Parents. You have open hearts and minds. You, Teddy and the girls will take his hand and walk together through this. We are with you.

Deanna K said...

Praying for you all! No judgment here...ever. :) Love you guys! :)

Sheri said...

Stacie- so thankful that you have finally gotten answers and validation that there is something that Ben needed help with.
Praying for you all and believing for great results!

Laurie E said...

Thanks for sharing Stacie and I hope no one will do or say anything negative. You have some great comments coming in so far. Very glad you have found some hope in the meds now. Sounds like it might just work! Will pray for all of you too.

Julianna Lawson said...

You know that I'm praying, too, my friend. So glad that you have some answers, and so very thankful that Ben is in the hands of Jehovah Rapha, our mighty, wise and loving Healer.

Coco said...

Wow Stacy! I could have written so much of your post in regard to Caden (who is also 10). The last ten years have been pure He_ _ for mainly Trace and I (his victims of choice). Trace would ask me at bedtime with tears in his eyes if we could please do something to make him be nice. It broke my heart. We went the route of sensory integration when he was 4 and it helped a little. He had tubes twice and toncils and adenoids out - no help. Over the years I've counted, I think, 10 doctors/specialists we have seen. I talked to ANYONE who would listen and read everything I could get my hands on. I really know where you're at with this! I finally reached my breaking point and told the ped I was ready to look at medication. IT WAS HARD. There is nothing positive out there regarding kids and meds. What is out there makes you feel guilty. I've decided to ignore all of that and concentrate on my child. Since medicating, he is a new kid! We still have problems - definitely - but they are manageable. My stress level has dropped significantly and his self concept has gone up! We just talked the other night about how his first 10 years were really rough but that was only a tiny part of what will hopefully be a very long life. I told him I knew something wasn't right and that I was never going to give up until I found a doctor who would listen to us! We've had other talks much like you've had with Ben. I tell him that everyone has a burden to bear - some worse than others and he is no different in that sense. Last March I finally decided on yet another psyc to try and when I called it was a 3 month wait. I totally fell apart and didn't think we could make it that long. But we did and it was SO worth it - he is wonderful and the best part is that Caden loves him. He also gave us a diagnosis with in the first three visits. He was shocked that no one else had ever done so. Then he confirmed that the medication he is on was the best choice (prozac). I was not happy about it, but I trust him and I can see that it has worked.
Well, I've gone on waaaaay too long about us, but I just wanted you to know that I really, really know how you are feeling and what you are going through right now. Don't feel guilty for one second about doing what is best for your child! There are some kids who NEED it and ours do! Hang in there and let me know if you ever want to talk!