Sep 08

No One Brings a Casserole

Screen Shot 2013-09-07 at 4.47.12 PMOnce again, I am attempting to sleep in a chair in an emergency room. It’s been three days since the kid was discharged from a three-month placement. He started in a CBAT (useless). From there, where he received no care, he was moved to a psychiatric unit where meds were finally changed. Final stop was a developmental disabilities unit for behavioral therapy and then home. Things were a little shaky and we thought it was just part of transitioning home. We have a wonderful behavior therapist that helped us navigate through some rough times. The hope was once he was back into his day treatment school and into his routine, he could settle. Unfortunately, that was not the case. This year has been exhausting.

And the hardest thing about all this madness is, as a friend of mine often says, no one bring a casserole.

These past three months were the second placement this year. He has been placed more than he has been home. It has been a physically and emotionally draining experience. It has stressed our finances. Free time is spent traveling to facilities for visits, attending meetings, making phone calls and doing research on offered treatment options. There were days the entire family would make the two-hour drive for a visit only to be turned away because he was unsafe. Resentment began to build. Family members felt robbed of weekends. Some of the things we were all feeling sound incredibly terrible and selfish – even in my own head. And the hardest thing about all this madness is, as a friend of mine often says, no one bring a casserole.

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Dec 12

Holy MTHFR!

If I say MTHFR, then Methylenetetrahydrofolate Reductase are the two words that pop into your brain, right? No? Well, hopefully after reading this, you’ll see more than that swear word that caught your attention.

If I next mention bipolar struggles, rapid mood swings, depression, anxiety, heart disease, strokes, macular degeneration, miscarriages – and any of these issues hit home for you, then read on, because you might just want to know about MethyleneTetraHydroFolate Reductase – better known by its abbreviation – MTHFR.

MTHFR is a gene and like all genes, it acts as a light switch – turning on or turning off various body processes. In this case, MTHFR takes folate (vitamin B9) and methylates (converts) it into methylfolate (5-methylTHF). Hardly seems like a big deal, does it? Yet, if you belong to an autism, Pandas, Lyme or chronic fatigue group, you’ve probably noticed a big buzz around this thing called methylation. While the past decade has seen MTHFR studied in terms of cardiovascular disease and cancer, it turns out it might also be a very big deal for those raising kids with developmental, neurological or behavioral symptoms and for those fighting chronic infections.

Methylwhat?

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Aug 10

To Med or Not To Med?

Recently, I witnesed a debate about medicating kids with invisible disabilities. Predictably, sadly, it got a little heated on both sides. Now, I have strong opinions on this as it relates to my own kids but let me state upfront that I do not feel that my opinions should be held by anyone but me. I’ve lived through moments where it took every ounce of self control, every molecule of patience, just to get to the next moment in time without losing my mind. I’ve had days where I’ve wished with all my heart for a pill that would make it all go away. I’ve also had days where I’m grateful that no such pill existed because walking a different path brought unexpected gifts.

Sometimes the decision to use a medication – for any illness – is a slam dunk. Other times, it comes only after an agonizing internal conflict. Sometimes it doesn’t come at all and you choose to slug through med-free. I think the reason many parents decide to give a child a pill – by prescription or an over the counter supplement – is because that particular medication just might give the body and brain something that’s missing. It’s a decision driven by the desire to give your child – and your entire family – a better quality of life; to provide freedom from hell on earth. It is not “taking the easy way out,” using “mother’s little helper” to shirk the hard work of parenting. It is choosing, each in our own way, to be a responsible, nurturing parent who’s trying everything possible to do the right thing. But there is no “right” thing in a way that’s “right” for everyone. Or even “right” forever. There is only “right” for right now.

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Mar 28

No Long-Term Benefit Of ADHD Meds?

ADHD meds no good, ADHD meds useless, avoid ADHD meds

wikimedia commons

Want to cause a ruckus? Criticize attention-deficit meds.

Over three million U.S. kids take these drugs to help them stay calm and attentive. Parents may not be thrilled to dose their children but they are following expert advice to improve behavior and school performance.  They tend to see results. And they don’t need to be judged.

But it helps to pay attention to what works for parents who don’t put or keep their kids on meds. My son was diagnosed with ADD when he was in first grade.  There was a great deal of pressure from his teacher to put him on medication. As many parents do, I struggled to find ways to alleviate the problem without drugs. We found significant improvement when we changed his diet but that wasn’t enough to make the school setting truly work for him. The way he learned best and the way he flourished simply didn’t fit in the strictures of the school environment. He wasn’t wired to sit still and pay attention for hours. Once we began homeschooling we discovered that without classroom and homework pressure, what appeared to be ADD symptoms largely disappeared.

The newest studies of attention-deficit disorder medications now indicate that the calming effect of these drugs don’t necessarily indicate that those who take them have any sort of “brain deficit.”  As L. Alan Sroufe, professor emeritus of psychology at the Universityof Minnesota’s Instituteof Child Development explains,  such medications have a similar effect on all children as well as adults. “They enhance the ability to concentrate, especially on tasks that are not inherently interesting or when one is fatigued or bored, but they don’t improve broader learning abilities.”

Research shows the effect wanes in a few years without conferring any lasting benefit. Dr. Sroufe writes,

To date, no study has found any long-term benefit of attention-deficit medication on academic performance, peer relationships or behavior problems, the very things we would most want to improve.

This isn’t to say that drugs such as Ritalin are useless. It’s important to remember that studies cited by Dr. Sroufe are limited to children with ADHD, not concomitant diagnoses such as oppositional defiant disorder, bipolar disorder, or autism where such meds may be invaluable. Even when facing ADHD itself, parents need support that extends beyond what the mental health system, insurance company, or school district willingly offers. Some states provide advocates who help parents stand up for the child’s right to appropriate education, including extra time to complete assignments, smaller class sizes, and the kind of counseling that helps ADHD children internalize behavioral standards and respond appropriately to social cues. Parents also turn online for support. The blogosphere is full of information and empathy from others raising ADHD children, including the following:

Easy to Love, Hard to Raise

ADDitude Magazine ADHD parenting blog and education blog

ADHD Awareness

Edge Foundation

A Mom’s & Dad’s View of ADHD

Life with ADHD

While Dr. Sroute looks for a mental health answer, I think it’s a much bigger issue. It asks us to look at how today’s children are restricted in movement, have less time for free play, and are exposed to unnecessarily early academics.  It asks us to look at the quality of the air, water, and food in the lives of today’s children. It asks us to support all families as they are, recognizing that one-size-fits-all guidelines don’t embrace diverse ways of being. To me, particular hope lies in research showing that free time spent playing in natural settings significantly improved the behavior and focus of ADHD children. The more natural and wilderness-like the area, the greater the improvement.

Are our wonderfully distractible, messy, impulsive children trying to tell us something?

 

Laura Grace Weldon is the author of Free Range Learning: How Homeschooling Changes Everything. She lives on a small farm with her family where they raise bees, cows, chickens, and the occasional ruckus. Laura writes about learning, sustainability, and peace for print and online publications. Connect with her at www.lauragraceweldon.com

Dec 19

It’s the Holiday Season

Marie has been humming and singing all over the house preparing for the Christmas Concert.  Where her younger siblings tired quickly of all the “noise” they called it, I reveled in it, singing right along when I could.  This was something I didn’t have to assist with.  I was ecstatic!

With all the pressures of getting ready for the holidays and keeping Marie on task with her schoolwork, tests, projects, etc., I wanted to pretend that I had nothing to do.  I wanted just a moment to pretend that I was all ready for the holidays and my five lovely children didn’t require any assistance with schoolwork.  Well, I can dream, can’t I?

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Nov 09

Update, mornings, and complete and utter guilt.

Hey there mamas and papas.

I am writing this from the Orlando airport. Kay Marner (my co-editor of Easy to Love but Hard to Raise) are presenting the book at the national CHADD conference, which starts tomorrow. I am waiting for Kay, who is arriving a couple hours after me, and in a weird way I am enjoying this time to myself.  Now that I homeschool both my kids I almost NEVER get 3 hours to myself, even if I have to share those hours with a bajillion other people and 8 different Disney stores.

Side note: I’m extremely exhausted as one of my *&^%!! dogs spent the night scratching and barking from his crate, and the other walked around the house all night long, apparently anxious because she pooped on J’s floor. Add that to a 4:15 alarm and you see why I’m having trouble thinking straight.

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Oct 20

What happened when I didn’t listen to my gut: in-laws, too much work, my ETL child, and a medication change

I am still recovering from my weekend.

J. is too.

We’re being nice to ourselves today so that we can get back to normal. Our “normal” isn’t very “normal,” but our “not-normal” is even worse. I am getting little things done round the house, treating myself to things like a long shower, brownies, and TV during the day. J. isn’t doing any academic stuff today unless he wants to, and he’s having a grand old time banging nails. Later, we’re going to do art with friends. Easy. Nice.

Earlier this week things were anything but easy and nice.

My in-laws visited. That in itself is not a bad thing. We love Grandma and Grandpa B! But their presence here is something out-of-the-ordinary, and J. doesn’t do that well with out-of-the ordinary. It ramps him up. So here’s the setting: J is ramped up, my workaholic husband is working working working every second he can (i.e. when not “having fun” with his parents), in-laws are here, and I take J. to a new child psychiatrist for a re-evaluation.

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Sep 29

Are we mothers, or martyrs? When and why do we medicate our ETL kids?

 

Patricia Quinn, M.D. served as an expert for the book Easy to Love but Hard to Raise

A recent survey of 1003 parents of kids with ADHD, co-sponsored by NovenPharmaceuticals, the makers of the Daytrana patch, and ADDitude magazine, found these, among other, results:

  • Nearly all children who take medication do so during the school day. Sixty-one percent of parents whose children take medication allow it to lapse beyond the school day.
  • More than one-third of parents find weekday activities and events—including after-school activities—difficult to manage, and 27 percent have difficulty managing family or social events on weekends.
  • Homework time was the most difficult time for parents to manage their child’s ADD/ADHD symptoms when the child was not taking medication.
  • This leads me to ask: Why is this? Do we medicate our children only when absolutely necessary—for school—but cope with our kids’ difficult behaviors at home, because we believe (consciously or subconsciously) that we would be medicating them for our own benefit, and therefore we are reluctance to do so? If not, then how do you explain those results?

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    Aug 23

    Lost and Found: ADHD Memories

    Poor working memory is a signature trait of those with ADHD. Although I realize this makes daily tasks overwhelming for some, it is particularly heartbreaking for me when the end of summer hits and others start asking my child: “So, what did you do this summer? … What was your favorite thing you did this summer?” and he responds with barely a shrug and says, “I don’t know, nothin’.”

    We put a lot of effort in planning a summer vacation. Some are more memorable than others, but this year’s — or so I thought — was one for the record books. Our ETL son, Hurricane Kid, glanced through the pocket-sized Frommer’s 100 Places to Take Your Kids Before They Grow Up (a handy little tool, by the way, www.Frommers.com) and asked if we could go to Mount Rushmore. My husband and I have always wanted to take the family there and added Yellowstone National Park to our itinerary, ‘cause we’d be in the vicinity anyway. This lengthy road trip was among several “to do” items we had planned for the summer. Here are my memories of how we fared:

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    Jul 06

    Without Hope

    A close friend of mine has an ETL teen in great need. They’ve lost their health insurance because their family business is struggling in this economy and, the teen is without medication and counseling. Now, his behavior is plummeting into not only causing family havoc but also other areas of the community.

    Even when he was receiving medication and counseling, he struggled at home and his mother was frequently called to come and get him at school because his behavior was out of control making the his current school placement come into question. If this is the right placement for this child, why isn’t he having success?

    Behavior and emotional disruptions occurred to the point the mother was unable to fulfill her responsibilities at the family business causing more family turmoil. This put additional stress on the father as he attempts to fulfill the daily needs of the business on his own. His own health needs are cast aside. Worrying about it isn’t even reasonable as there is no help available – even though he has a pace maker which now will go unmonitored.

    The mother is on the phone with counselors, teachers and other professionals constantly along with taking the teen to various appointments and trying to set up supervision to monitor the teen. The other family members feel they’re held hostage in their own home never knowing when an outburst will occur.

    The family’s friends make less and less social calls to them feeling uncomfortable about the uncertainty and the level of stress in the home. Bills pile up as legal issues roll in that parents are still responsible for as their teen gets into more and more trouble. At one point, they even try to use the legal system to at least set limits and put some type of structure into the situation knowing the behavior can’t be allowed even though the teen’s needs aren’t being met, but because the teen is a minor – they’re then told they’re responsible for legal fees. More stress and more bills.

    The ETL teen feels angry, isolated and lost. The family feels the same. The family reaches out to try to get services to treat the child but is then audited. How could their business lose so much money in one year? If the audit is not found in their favor, they won’t receive any health care and service organizations will not see the teen without coverage.

    The teen talks of suicide. Sits on the roof overlooking a farmer’s field. The mother watches helplessly caught in the midst of chaos of the system, her teen and the rest of the family. She tells the counselors what is going on. She tells her teen she loves him, but his behavior is unacceptable. She tries to spend time with her other kids and manage the house. Inside during a quiet moment, she too wonders if she fell asleep and didn’t wake up if there’d finally be some peace. She knows that’s not the way. Where can she go? What can she do? Sometimes, it feels there is no help at all for certain children and families and the more you try to get help, the more you get buried. Hopeless. Lost.

    I wrote previously about my own experience with this situation. I feel for this family, and would never want to go through that again. It was many years ago that I struggled with health insurance and getting services. What a sad reality that for many nothing has improved.