Tuesday, November 29, 2011

Get the Family Together for Fun!

Trying to play a family game with a child who has mood issues can be a challenge for the whole family. My son can easily get stressed out or too competitive, taking away any enjoyment possible. But over the year we’ve found great success with the game Hedbanz. It’s a simple game that has an easy flow without a lot of complicated rules. If you’re out looking for a family game for Christmas this year, I highly recommend it!

Sorry if this is starting to feel like an advertisement, I promise you it’s not, I’m just excited to share something that works! I’m not much of a game girl, I get way too impatient, but this game was a blast even for me.

To play, each family member wears a goofy headband around their forehead then they stick a game card into the headband with the image facing out. It’s completely ridiculous looking which adds to the fun of the game. Then each person takes a turn with a sand timer asking questions about what they may be (the image in the card). So I may ask:

“Am I a food?”

“Am I an animal?”

The family can only respond with “yes” or “no” answers. Once you get a “yes”, you can narrow your questions to a more specific area.

“Am I an object?”

“YES!”

“Am I an appliance?”

“Am I a toy?”

“Am I a ball?”

You have until the timer goes out to guess what you are. If you guess right, you earn a point, if not, it’s the next person’s turn. For kids that easily feel defeated, it helps that you get to continue with your same card on your next turn, no starting over until you guess right. I love that you can narrow the game to be short or long. In some cases we declare a winner after someone guesses correctly 3 times, other games we play longer.

This is one of those games where you spend more time laughing than anything else. My kids love it and it seems effortless for my son. It’s a great way to get the family together for some low key fun.


Here it is on Amazon (You may find it cheaper in Target):
http://www.amazon.com/Spin-Master-Games-6014346-Hedbanz/dp/B003AIM52A/ref=sr_1_1?ie=UTF8&qid=1322620946&sr=8-1


Sunday, November 27, 2011

The Decision is Made

Well the holiday is over and now it’s back to serious business. Our pediatric nephrologist has made the final decision to do a biopsy on my son’s kidneys to evaluate the damage that has taken place over the years from his kidney reflux (a birth defect), allowing all doctors involved to make the best decision for my son’s care.

I’m not surprised that this is his final decision and I know that it was seriously considered being that he consulted multiple doctors who all felt this was the best thing to do, but it doesn’t take away my concerns. Any medical procedure comes with risks and I hate risks.

In the meantime, we have to get the procedure completed by the end of the year since our insurance is switching over to Anthem Blue Cross HMO. I realize I went against the grain in choosing an HMO, but we felt the decision was easy because the doctors we wanted were all covered by this plan and if he were ever hospitalized for psychiatric care, he will be sent to the best hospital in our area. In addition, we were very nervous about the unexpected fees that we may incur. I don’t think we could afford to cover 10% of major surgery and with my son’s kidneys, we need to be prepared that this may be in our future someday.

After all that is said and done, I’m happy to have finally made the decision with our health care plan and I’m excited to meet our new doctors. I don’t want to get my expectations up, but as for right now, I have a good feeling about it.


Thursday, November 24, 2011

Family, Feast and Fun!

Today was a great day with family and a delicious Thanksgiving feast. Both my husband and I woke up in a great mood, there was a feeling of optimism and appreciation for all we have to be thankful for. It’s been about 5 years of really tough stuff and this year we felt like we could sit at the table feeling at peace.

After a fun day of spending time with family we love so much and being spoiled by my awesome mother-in-law who worked in the kitchen the entire day preparing an incredible feast, I’m now off to do something ridiculus, I’m going into Target at midnight to do some black friday shopping. Go ahead, make all the jokes you want, yes I am one of the wild ones. But I do have my limits, no standing in line outside the building, so I’ll be following the crowd in to pick up their leftover scraps. Hopefully I can save our family a few bucks. If not, I’ll be back in bed and sleeping in, there will be no early rising tomorrow.

Happy Thanksgiving Everyone!


Tuesday, November 22, 2011

Thankful for the Small Moments

With Thanksgiving break in full swing, we’re seeing our son struggle with all his free time. The change in structure is difficult for him and he seems to be off lately. Today, I spent my time keeping him from bothering his brothers by redirecting him into projects or activities that he can do by himself. Unfortunately, I had to do this over and over and tonight I feel pretty exhausted. I’m also concerned that he may be falling below his therapeutic range.

But tonight, I want to focus on the positive. It’s the small moments that for most seem pretty ordinary.

It’s the moment I see my son smile.

It’s the time we went on our first night walk, laughing and connecting like never before.

It’s the evening I picked my son up from a birthday party and he asked to stay longer.

It’s the day my son swam across a lake with his brothers, giggling like little boys should.

It’s the day my son decorated our door with welcome home signs for his Dad after a business trip.

It’s the day my son did his homework without going into a rage.

It’s the moment my son tries to help his younger brothers.

It’s the moment when my son agrees to be flexible.

It’s the silly moments where our house fills with laughter over farts and poop jokes.

It’s the moment when we all cuddle on the couch to watch our favorite show.

It’s the moment when my son opens up his heart and shares his life with his “uncool mom”.

It’s the moment when I feel like we’re just an ordinary family, living an extraordinary life.

Tonight I am thankful for all this and more. I’m also thankful for all of you who follow my blog, allowing me to share our journey and support us along the way.

Thank you from the bottom of my heart.


Sunday, November 20, 2011

When Medicine Got it Wrong




Thanks to my new twitter account, I came across Katie Cadigan’s tweet about her documentary When Medicine Got it Wrong. This film is about a group of ordinary parents in 1974 that publicly refused to accept blame for causing their children to have schizophrenia. It was the first of its kind, coming out of an era where mental illness in children wasn’t accepted. This group of parents came together to fight for their children and brought advances in understanding, treatment and brain research.

It’s pretty amazing what a few parents can do. This gives me hope for our future, maybe we too can make a positive change!

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Where to view the documentary:
http://www.der.org/films/when-medicine-got-it-wrong.html

The Official website:
http://www.whenmedicine.org/MedW/Home.html

Thursday, November 17, 2011

Peer Perspective

Yesterday we had our parent teacher conferences. I was very pleased to see that my son is performing well academically and that his teacher continues to support us and make modifications when necessary. One of the modifications she made at the meeting was to allow my son to slip quietly into the library to get a head start on his homework 15 minutes before class ends each day. We’ve found that my son is much more willing to do his homework when in school, but once at home he gets overwhelmed with the amount of work and starts to stress out, which as you can imagine, shuts down all productivity. So we agreed that giving him a head start at school will help him not feel so overwhelmed and give him a sense of accomplishment before the stress sets in.

The highlight of the meeting came when the teacher shared that earlier in the week she had a conference with another student who sits at my son’s table. During the meeting the girl showed her parents her desk. As they were checking it out, her Mom asked who she sat next to in class. The teacher overheard the student say, “I sit next to (my son’s name) and he doesn’t say mean things like last year, he is really nice now.”

It was awesome to hear a peer perspective of how far my son has come. Things are not perfect by any means, but the change is monumental!


Monday, November 14, 2011

Stanford University Mood Disorder Videos

Stanford University has recently added videos to their website for each speaker presentation for the 7th Annual Mood Disorders Education Day that took place earlier this summer. Click on the link below and you’ll see the first video of Terence Ketter, MD with the welcome and intro. Below this is a list (example below) with a link to “watch video” for each individual presentation. For those with children, you may be interested in the Child and Adolescent Mood Disorders Update by Manpreet Singh, MD. This is definitely worth your time!

Link to all the videos:

Here’s a list of the videos offered:

Welcome and Introduction to the Stanford Mood Disorders Center
and the National Network of Depression Center

Terence Ketter, MD
Director, Professor of Psychiatry and Behavioral Sciences,
Chief of the Bipolar Disorders Clinic


Stress and Depression
Alan F. Shatzberg, MD
Professor of Psychiatry and Behavioral Sciences,
Director of the Stanford Mood Disorders Center


Neuromodulation Treatments for Mood Disorders Update
H. Brent Solvason, MD
Assistant Professor of Psychiatry and Behavioral Sciences

Child and Adolescent Mood Disorders Update
Manpreet Singh, MD
Assistant Professor of Psychiatry and Behavioral Sciences, 
Co-director of the Pediatric Mood Disorders Clinic

Sleep and Mood Disorders
Allison Harvey, PhD
Professor of Clinical Psychology, University of California, Berkeley

Perspectives from the National Alliance on Mental Illness (NAMI)
Robert Villanueva, NAMI

Perspectives from the Depression and Bipolar Support Alliance (DBSA)
Katherine Lere, DBSA

Nature vs. Nurture in Mood Disorders
Shefali Srivastava, MD
Clinical Instructor at the Bipolar Disorders Clinic, NIMH Mood Disorders Fellow


In case you missed it, here’s a link to my post reviewing all the info I gathered after attending this event and participating in the Q&A session with Dr. Singh:

Sunday, November 13, 2011

A Game of Catch

Today my husband played a game of catch with my son. This may seem insignificant to most, but to us, this was a huge step.

There was a time when my husband had to let go of such dreams. All of the typical things a Dad dreams of doing with his son were not possible because of my son’s moods. He was either too depressed, anxious or agitated, this of course stole any self confidence and made him give up easily when frustrated or refuse to play all together. But this weekend, my husband bought a new football and tried once again to play a game of catch.

I wish you could’ve seen the smile that was on both of their faces, the pride my son had when he caught the ball or even better, when he could throw it past his Dad. What was a game of catch to most, was a dream come true for us.


Thursday, November 10, 2011

Facing the Inevitable Next Step... More Medication

I think most of us would agree that medicating your child is a very scary step. For me, I delayed this step, even though our doctors encouraged it from the beginning, because I was scared of the side effects as well as the judgements of society. Let’s face it, people aren’t very kind to mothers who medicate their children. More than once, I’ve gotten the hard, judgmental looks from other mothers, I’ve received the nasty emails calling me bad names and have read more than my fair share of criticism online. But I made this step, accepting this ridicule because my son needed it and was begging for help. When everything else failed, we turned to medication.

But what I wasn’t prepared for was the inevitable next step... more medication.

I’m sure some would assume that once you’ve open that door, it would be easy to add more medication when the doctors advised it. But honestly, I think this step was even harder.

You’d think I would’ve been ready for this step since I’ve read enough forums to see that many parents of mood disorder children achieve stability with multiple medications. But it still terrified me, even to this day. I don’t want my child on a grocery list of meds. But I can see how it happens. One medication treats one symptom, another treats another symptom. Then if your child gets a side effects, another medication may be introduced for treating that. The list can go on and on. Also, as another medication is added and you finally reach the utopia of stability, nobody wants to mess with the cocktail of meds, what if the house of cards falls when you remove just one of the medications. The entire treatment process is overwhelming, stressful and pretty much sucks!

About a year ago, my son was going through some very violent rages, psychosis and suicidal thoughts. I remember many followers suggesting that my son needed more medication. One in particular, advised me that his rages didn’t have to be like this and that we could get it under control if we would just add another medication. Being scared of this next step, I didn’t do anything, but endure more rages and let my son suffer. What was my reasoning? I was scared that the side effects would be worse than the symptoms. I was worried that he would end up more sick. As it turned out, I was wrong.

Since that time, we’ve added another medication and for the first time we’ve experienced what true stability is. Things are not perfect, but from where we came, it’s close enough. His symptoms are much better under control. He hasn’t seen any monsters or had suicidal thoughts. His rages are very rare and never as bad as they use to be. For the first time, we’re able to put therapy into practice and as a family, we’re slowly healing from all we’ve been through. Now looking back, I regret not helping him sooner. I regret that I let my fear hold us back.

But you know the ironic thing, adding medication doesn’t get any easier. If our doctor would suggest another medication today, I would research, evaluate the risks verses the benefits and pray. I would still have that nervous feeling in my stomach and take the decision very seriously. However, I’m confident that I would no longer let the judgements of others persuade my decisions, I’ve learned long ago that there are many “haters” that have no idea what your child is going through and are in no position to judge, but will do so anyway. I wish I was prepared for that in the beginning.

This is a long journey and unfortunately there are no right answers, just many paths and in the end, you have to trust your instincts. You know your child best!


* * *

This post will appear as part of the 12th edition of Best of the Best on the S-O-S Research Blog. Check there after the 15th to read more entries by other bloggers who are sharing special moments in raising children with invisible disabilities.

Visit this link after Nov. 15th:
http://sos-research-blog.com/11/s-o-s-best-of-the-best-edition-12-medication-use-with-special-needs-kids/


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A Few More Posts Regarding Our Journey with Medication:

When All Systems Fails:

Medicating My Child:

Lithium at 29 Days:

Tuesday, November 8, 2011

When Church Doesn’t Welcome You

Over the past year I’ve received a handful of emails from parents that have been pushed away from their church. In some cases, it’s due to ignorance. As in the case of the family that was told that their child’s mental illness was a direct result of the parent’s sin. Other times, it’s more subtle, maybe their child is too loud during service and can’t sit still, taking away from the “holy” experience, bringing on hushed criticism or rude looks. Either way, the intolerance is felt and families leave their church when unfortunately, they need it most.

Forgive me for preaching, but isn’t God for the weak and broken hearted? Didn’t Jesus scold the disciples when they tried to keep the children away from Him? The church needs to be a place for those that seek Him, even if that means dealing with a loud, unruly child. I know in my heart that God would want it that way. A relationship with God is not perfect, it isn’t about pressed pants and perfect families. God’s family is messy in everyway and God wants us to run to Him when we are hurting, He wants to carry us when we no longer have the strength to go alone.

It breaks my heart and to be honest, makes me angry to hear of families that need God, that desire to be part of a church family, yet have stopped attending because they’ve been turned away directly or indirectly.

I hope to encourage you that there are churches that are accepting, that have awareness or are willing to learn about our children’s needs. They’re dedicated to supporting our families and want to help us in a spiritual as well as practical way.

After over a year of searching, we’ve been very fortunate to have found such a church. Since then, 3 years later, we’ve been offered sitters, meals, one-on-one support and constant prayers. Just this past summer, our Pastor went on a sabbatical with his family for 3 months. During this time, he was suppose to leave everything behind and focus on his family and God so he could recharged himself. He had intended on leaving all prayers for his congregation with his staff, but later shared that my family kept popping into his mind so he finally decided to “pack us up” and take us on his sabbatical where he prayed for us. Besides these abundant prayers, our church has helped to offer solutions for our kids, especially our oldest son, who has a hard time sitting through the services. They allow him to bring his iPod or small toys when he isn’t in a mood to participate, they provide “family tables” with paper, crayons and snacks to keep the kids occupied and they offer a hug when we show up late, knowing that it must have been a difficult morning. To this day, I still get emails asking if there’s anything else they can do to help our family.

I realize how blessed we are to have found this special church where we can grow with God as a family. If you are part of a church and happen to be peeking in on this post, reach out to your staff to see what can be done to help families like myself that are needing accommodations or reach out to the family that has disappeared when it became too hard to attend service and invite them back.

And for the family that has been hurt by their church after being pushed away, keep searching and don’t give up until you find your new church family. Not all churches are the same, but God remains constant wherever you go. As difficult as it is attending church with my bundle of boys, it’s been a blessing in so many ways and was worth the hard work to find it.

* * *

Can you share any successful accommodations you’ve used with your own place of worship?

Sunday, November 6, 2011

A Special Request

When talking with my middle son about how to help him cope with the stress he sometimes feels from his brother, he suggested doing more family fun nights.

For us, a family fun night may be as simple as playing a board game or watching a special show together, nothing too fancy. But I will admit, at the end of the day when things are rough, it can be hard to pour into my kids with this kind of energy. Playing with my kids is hard work, there’s a lot of referring and negotiating that needs to take place, including the typical “stop touching your brother and watch the movie” moments. Depending on how stable your child is, this may need to wait until things are better, but if things are on the upswing, I think we all can agree this is a good idea.

But what I didn’t realize was the kind of impact it had on the siblings. My middle son explained this when he said, “We need to do more family fun nights because it helps me feel safe while having fun at the same time. If you and Dad are there playing a game with us, I feel like you can protect me and I get to relax and enjoy my family.”

Pretty insightful kid, huh!


Thursday, November 3, 2011

Uh Oh... HMO or PPO?

Ok, I need your feedback. Right now we’re trying to navigate our health insurance for next year. We can choose from an HMO (Anthem Blue Cross) or a PPO (Aetna for basic health and Magellan for mental health). I’ve read a little about the positives and negatives of each, but was wondering what your experience and preference was. Care to share?


Wednesday, November 2, 2011

Prayer is Requested...

Tonight I read the heartbreaking post by my fellow blogger Accidental Expert at Raising Complicated Kids. She’s in desperate need for prayer and is asking for it tonight. Please go to her blog now to read her story and lift a prayer up for her son and her family. We may be divided by distance and online anonymity, but we can come together in the name of God.

A Call To Prayer:
http://accidentalexpert.blogspot.com/2011/11/call-to-prayer.html?showComment=1320295155784#c3472580157514755387


Tuesday, November 1, 2011

Ride Don’t Hide



Have you ever been on a long bike ride? To the point of getting blisters and a good sunburn? Check out this hero, his name is Michael Schratter, a Vancouver school teacher and newspaper columnist who set out on a 40,000 km journey across 30 countries all to raise funds for mental illness!

Along his journey, titled Ride Don’t Hide, he’s sharing stories of mental illness and bringing awareness to the stigma surrounding it. All funds raised will go towards children and youth suffering from mental illness.

In an interview with The Vancouver Sun, Michael, who was diagnosed with hypomania (a mild form of bipolar disorder) shared that there is a stigma around those with mental illness and it was time to bring it out of the shadows.

“Hollywood and the media have painted mental illness in a really scary light, that the mentally ill are dangerous. The only time the mentally ill make the newspaper is when something horrific happens so it’s no wonder that everyday people like myself don’t want to talk about it.” (The Vancouver Sun, September 16, 2011)

Michael’s ride started on August 17th, 2011 and will end on November 12, 2011, just 10 days away! Visit his website today to donate, add to the stories being shared or just to leave a message of support.

It’s exciting to see individuals step up to make a difference in a big way. Way to go Michael!

http://www.ridedonthide.com/


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References:
The Vancouver Sun
BY KIM PEMBERTON
http://www.vancouversun.com/health/Teacher+crazy+dream+gets+boost+with+leadership+award/5412128/story.html

SEPTEMBER 16, 2011
Consulted: Nov. 1, 2011