May 16

Taming the stress monster (If you can’t change the child, then change the environment)

As someone who has edited a book about parenting children with invisible special needs like ADHD, ADD, OCD, Anxiety, Autism, FASD, and any number of other alphabet-soup diagnoses, I’ve noticed something curious: people have started asking for my expert opinion about parenting.

I am the expert on nothing except stress, I say. And not in a how-to-overcome-it-and-lead-a-happy-life kind of way, either. As in, I am constantly stressed and since every time I seem to get over a particularly large parenting hurdle I see another up ahead. I have no real idea how to tame the stress monster that threatens to take over my life.

My son’s behavioral issues seem to come in cycles. Because of his processing problems and potential for sensory overload (all of which are due to prenatal alcohol exposure; he has fetal alcohol spectrum disorder), the more calm and contained we can keep things, the better. But then something happens, like we go on a trip, or we have a visitor, or my husband has to work a lot, or we go to a family party, or the seasons change, or they’re having a field trip in school, or what he thought we were having for dinner isn’t…and it’s an all-systems go moment for him, and the part of his brain that functions pretty well in calm moments stops – and the impulsive, sensory-seeking, wild mind takes over.

When he’s worked up it takes Herculean efforts on our parts to manage him. Tantrums, throwing things, screaming, impulsivity, swearing, arguing for the sake of arguing – and no real way to stop him besides physically removing him from the situation.

Every time something triggers him, his behavior triggers me. If he blows, I blow – maybe not always in the moment, because in the moment I have to deal with him – but I can feel my shoulders rise, my throat get tight, my head begin to throb, and unless I can handle the situation quickly the stress monster has me, and has me good. Even when the incident is over I can’t think of anything but what just happened, how I could have managed it better, and how terrible a mom I am.

Recently my son has been in a good cycle. At home we’ve been keeping it calm and predictable. I’ve had time to exercise, see friends, and have a little fun. My children have been getting along. My husband has been balancing his job and home better than he has in a while. I’ve felt like I had a handle on my life and my stress. All has been great, until…

Carpool. My son goes to a school for children with special needs – learning challenges, behavioral problems, and difficulty regulating their emotions. It’s a good fit. It’s also an hour from home.

Carpool usually is quiet, except when it’s not. And yesterday it wasn’t. I don’t know what was going on with them, but the minute they got together they started sniping, goading, and teasing each other.

All efforts I made to stop it, including asking them nicely, asking them not so nicely, threatening to involve parents, threatening consequences to my child, didn’t work. I was ignored. And we still had 20 minutes left in the car.

My guy escalated fast: he swore at the other two kids and threatened them, then pulled his fork from his lunch box, bent it in half, and waved it around. “I’m gonna shove this up your butt!” he yelled to one of the kids.

I pulled over.

I then took my child from the car and swatted his behind. I screamed, “What are you doing? Why are you acting this way?” He screamed, cried, then said if he had a gun I would be dead. We got back in the car.

For the last 20 minutes of the car ride there was complete silence. We walked into school, the kids put their lunches away and went out to the playground, and I burst into tears. The school director gave me a sympathetic ear but it did little to calm me.

The rest of the day I was a mess. I couldn’t think of much else besides what happened in the car and how I completely mishandled it. How did spanking him solve the problem? How did screaming? But what would have been better? Completely ignoring them? Allowing him to continue to scream obscenities? Allowing them to continue to tease him and goad him and grin when they got him to explode?

I have no answer. And I’m not writing this in the hopes that someone here can tell me what I should have done. I can’t change what happened. I can only try to change what will happen. And part of that is taking a break from carpool for a while – a good long while. Several extra hours a week driving in peace is worth it to me, as is keeping my boy – and me – calm. Anything to keep that stress monster away.

(Image courtesy of flickr user autumn bliss)

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May 04

Helping Each Other

I love this blog, our Facebook page, and the book, Easy to Love But Hard to Raise because they all focus on connecting and supporting parents of children with invisible disabilities, mental illnesses, and brain-based special needs. Together, we are stronger, wiser, and hopefully a little more satisfied with this defining life experience of parenting kids who need more.

When my twin boys were first being diagnosed as toddlers a few years ago, I discovered my county support network, Parent to Parent of Whatcom County (P2P). Their free services include the emotional support of a trained Helping Parent whose parenting experiences match mine as closely as possible. They also offer hosted social and recreational events, current information on disabilities and medical conditions, and referrals to community resources.

The first essay I wrote about life as an ETL parent eventually appeared in my local P2P newsletter. A couple of years later, a different form of that essay now appears in our beloved Easy to Love But Hard to Raise. I feel as if my experience with P2P is coming full circle. Later this month, I will host a reading and support meeting for the group, the book is being considered for a new Parent Support Book Club they’re developing, and I’m considering becoming a Helping Parent myself.

A couple of weeks ago, our family attended a free P2P-only ice skating event. My boys had been asking for months to go for their first try, but I’d been avoiding it. I didn’t want to deal with public meltdowns and crowds of people that don’t understand us. But with P2P, our experience went far better than I expected, the kids had a positive first experience, and we were surrounded by people who “get it.”

Barbara Claypole White has blogged here before about whether or not to join a support group, and in the end, it’s a personal decision that has to work for you, in your circumstances, in your own life. For my family, P2P has been exactly what we needed. Barbara said it well when she wrote, “Finding the right group—or stumbling into it in my case—is a blessing. We may cry in the middle of sessions, but by the end we’re laughing. And if you can laugh at least once during a day of parenting an obsessive-compulsive child, you’re a momma who can keep on truckin’.”

If you need the support of others near your community, Parent to Parent USA has local chapters throughout the country that just might be a good fit. Check ‘em out, and please, keep on truckin’.

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May 01

Going on a book tour! A book BLOG tour, that is!

Since Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories, was published as of February 1, things have been going GREAT for the book, the editors, and the writers who contributed to our collection of essays.

We’ve been selling books, talking to folks, and creating fellowship and community among beleaguered parents of children with invisible disabilities, mental illnesses, and brain-based special needs everywhere!

The book’s been reviewed, the editors have been giving talks, the authors have been doing readings, newspaper articles have been written…and now it’s time for a book tour! A blog tour, that is, because let’s not go too crazy: we’re operating on a shoestring budget in our teeny tiny publishing company. We’d love to send Adrienne and Kay cross-country talking to folks about the trials and tribulations and stresses of parenting highly unpredictable children, but that’s not in the budget.

So we’ll do it, virtual-style.

Here’s the plan: if you are a BLOGGER or a WRITER or have a FOLLOWING on Facebook, we’d love for you to be part of our summer book blog tour. In exchange for a scheduled review, guest post, blog interview, podcast, or a Facebook or Twitter interview, or something else you’ve thought of…you will get a copy of the book (or 2, if you’d like to do a give-away), cross-promotion on the Easy to Love blog and Facebook page, and our undying appreciation and LOVE.

All of this will go down this summer.

E-mail Adrienne at editorial@drtpress.com to volunteer.  We hope to have everything scheduled by the end of May, so don’t wait to long to contact us.

 

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Apr 12

Crisis Strikes

When your ETL child becomes a young adult and some of your worst fears happen (severe cycling, job issues, legal issues, relationship issues, drug issues), what do you do?  How do you cope?  While I haven’t discovered the “real” answer to questions like these, I think the most basic and real answer is that you just keep going.  You live. 

“Challenges are gifts that force us to search for a new center of gravity. Don’t fight them. Just find a new way to stand.”
Oprah Winfrey

 It’s hard to separate yourself enough from bipolar disorder and addiction (or other special needs) to accept that regardless of the issues, there’s a reality check of joining the adult world that can’t be avoided.  The law is still the law.  Bills are still bills.  Responsibilities are still responsibilities regardless of whether a person is going through the manic stage, the depressed stage or using a substance again. 

 So, crisis strikes.  As a caregiver, you’re sad.  You’re depressed.  You’re angry and then – disappointed.  Helpless.  Hopeless.  And, maybe moments of hopefulness.  Who knows?  The grief cycle can send a caregiver loopy – all that denial, negotiation, anger and blah blah blah. 

 You have to live.  Take care of yourself.  Stop and take a few breaths.  Let yourself have a few moments of quiet to think before just reacting.  Accept that it’s alright for natural consequences to occur even when they suck. 

 This doesn’t mean you’ve failed as a caregiver.  It’s not your job to make decisions for other people.  Then what?  Going through a crisis is different for everyone.  I’ve tried all the different positions on the continuum including enabling and tough love, neither, of which is any great place to be.  I try for the middle road.  I still have love, and I think it’s ok to say so.  I have anger.  I can express that too.  I can set boundaries. 

 I can allow myself an evening of walking the dogs alone or drinking tea to let the swirl of thoughts that’s a tornado in my mind to settle.  I don’t have to react.  I don’t have to do.  If you’re thinking of doing something, and you have a sick feeling in your stomach about doing it, I’d rethink it. Ponder it.  Pray on it.  Meditate.  Whatever works and get some perspective.   Doing nothing at the moment doesn’t mean you’re doing nothing.  Taking time is a choice.  Time can bring clarity and peace. 

Breathe. Let go. And remind yourself that this very moment is the only one you know you have for sure.”  – Oprah Winfrey
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Apr 03

Understanding Bloomers

A recent article by Linda Carroll, Outgrowing Autism? Study Looks at Why Some Kids “Bloom” highlights a new Pediatrics study of 6,795 California children showing that “about 10 percent of children who are severely affected by autism at age three seem to have ‘bloomed’ by age eight, leaving behind many of the condition’s crippling deficits.”

This article got my attention because my own twins, although never diagnosed with autism spectrum disorder, showed symptoms associated with Asperger’s by age 18 months but now, having just celebrated their eighth birthday, those symptoms seem like a distant bad dream we’d all like to forget.

Could I be the proud mother of a couple of bloomers?

Carroll’s article goes on to explain that when researchers looked at the characteristics of the bloomer’s families they found a few commonalities: bloomers tended not to have intellectual disabilities and their parents had more education and financial means to get early, intensive therapy. Mothers (fathers weren’t studied) had at least a high school education and came from a “higher socio-economic class.”

The anthology Easy to Love But Hard to Raise is full of parent’s stories, including my own, that share our ambitious, creative, and persistent search for solutions to our children’s behaviors and disorders, alongside the myriad of feelings that came with their diagnoses.

Parents who have been through it might question the use of the term “grown out of it” because it implies that the child might have shed their diagnosis simply with the passage of time. This article from February that studied 1,366 parents of autistic children suggests that 33 percent of children may downgrade their diagnosis to Asperger’s or shed their autism diagnosis altogether by age seven, but not without intensive parental support. Other previous studies have suggested that number lies between 3 and 25 percent. Parents of ETL kids understand that our children have improved because of our early, tenacious efforts and the help of teachers and professionals.

Another article published in Pediatrics in January supports the finding that children that “grow out” of autism tend not to have other physical and psychological diagnoses. Children with a hearing impairment were the most likely to shed the autism diagnosis because once their issues were addressed, the other autism-like symptoms resolved. This fact sheds light on the potential for misdiagnosis, which certainly exists when trying to diagnose children of preschool age and younger.

Can the study of autistic bloomers be extrapolated to children with other disorders? The answer seems to be the dreaded “it depends.” Psychologist Dr. Ari Tuckman’s video blog for ADDitude Magazine suggests that some children with Attention Deficit Hyperactivity Disorder (ADD/ADHD) improve because they learn to better manage their symptoms and their brains continue to develop and “tighten up” into their early 20’s. However, the majority of those with anxiety disorders report that severity can increase with age, although medication and cognitive behavioral therapy can help.

And what’s so magical about age seven or eight, the age by which these children are “growing out of” autism? Age seven is the beginning of a brain development phase termed The Period of Concrete Operations, a milestone of sorts, which lasts until around age twelve, where logic, organization, and problem-solving expand and egocentricity declines. Could more children be helped if diagnosed earlier? It’s too soon to tell but most studies suggest that the earlier the intervention, the greater potential for results. Fortunately, the average age of autism diagnosis has gradually come down to age four, but also means that many children are still diagnosed much later.

To help our eight-year-old twin boys, we sought the advice of physicians, naturopathic doctors, occupational therapists, ophthalmologists, and speech and language pathologists, while reading every relevant library book and web site under the sun, investing a small fortune, and spending the equivalent of a part-time job focused on their improvement. Many of my blog posts here have focused on the therapies we’ve tried. My husband and I do have more than a high school education and although we wouldn’t consider ourselves of “higher socio-economic class” we are frugal, resourceful, and willing to learn and faithfully execute the therapies we can do at home, avoiding expensive appointments when possible.

We definitely believe that our boy’s significant improvement over the past four years is due to the incredible, early support, education, and advice we’ve received from teachers, professionals, and fellow struggling parents, and for that, we are eternally indebted.

Although focusing on the 3 to 33 percent that are bloomers may leave some parents whose children are over age eight, suffering from multiple diagnoses, or lacking access to resources feeling hopeless, it’s my firm belief that clearly understanding what enables bloomers to thrive could eventually increase the number of children abandoning a diagnosis in the near future.

Animation courtesy of Gifbin.

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Feb 07

Happy blogaversary book giveaway winners!

Thanks to everyone who commented on the Blogaversary blog post! 5 people have been chosen at random to win a free copy of our new book, Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories!! If you are one of the winners please send your mailing address to: editorial@drtpress.com and we’ll pop a copy in the mail.

Here are the winners and here’s what they said makes their ETL child so easy to love, but so hard to raise:

Continue reading

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Jan 31

Happy, happy Blogaversary! We’re celebrating with a present for YOU!

One year ago we started this blog! In blog years that’s like a century! I think I can speak for all the contributors here when I say it’s been wonderful to be part of this community. Parents of children with invisible special needs need help, commiseration, and the knowledge that they are not alone, and this is what we’re trying to do here at Easy to Love but Hard to Raise.

 I’ve had many days where I’m perplexed, depressed, worried, sad, and puzzled my by ETL child’s behavior and posted about it, only to find out within minutes that I’m neither alone in my problem nor am I without solutions.

Looking at the facts and figures for the site I see that we’ve had over 75000 blog posts read! The two posts clicked on most often are: If You’re Going Through Hell, Keep Going … or Making Sense of the OCD Diagnosis, by Barbara, and Detachment parenting, or Confessions of a Robot Mama, by me, Adrienne. Interesting, right? Both posts are about shouldering through a rough situation, which in a lot of ways is the theme of this whole thing – book and blog! As parents of children who are easy to love but hard to raise, I don’t see that we have any other choice in the matter.

We’ve also gained over 1200 fans on our Facebook page, which is amazing. Between the comments on the posts and the discussion going on through Facebook I’ll steal something a poster recently said and tell you that I feel like this is the best support group I’ve never met! I’ve had many days where I’m perplexed, depressed, worried, sad, and puzzled my by ETL child’s behavior and posted about it, only to find out within minutes that I’m neither alone in my problem nor am I without solutions.

I thank you all for this, from the bottom of my heart.

cover of Easy to Love but Hard to RaiseBut enough of the facts and figures and gushy thank yous. In celebration of our birthday, we’ll be giving away 5 copies of Easy to Love but Hard to Raise this week! All you have to do to enter is post a comment on this post telling us WHY your child is easy to love and also hard to raise. At the end of the week I’ll be drawing names. Go! (and spread it!)

(cake photo by flickr user chidorian)

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Dec 15

“Mine!” “I want…!” “More! More! More!”: More than the usual behavior problems of an alphabet-soup-labeled ETL child

I was less patient than normal this morning as I pushed and prodded my 11 year old ETL daughter, Natalie, through her getting-ready-for-school routine. Continue reading

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Oct 27

A New Independence

When I went away for two weeks to Italy (which I wrote about here and here), and then returned just in time to get knee surgery, I saw it as an opportunity for my twin ETL 7-year-olds to develop greater independence.

Goodness knows, I was ready. I enjoy that my boys love me and want to spend time with me, but before I left they seemed overly dependent. “Mom, I’m thirsty. Mom, I need a pencil. Mom, will you brush my teeth for me.” I had a tough time making my response positive and constructive, rather than how I usually feel, exhausted and annoyed.

“You know how to get yourself a drink of water. I know you are aware of where the pencils are. I’ll brush your teeth for you if you’ll brush mine.”

I took their dependence to  mean they needed more time with me. Considering the circumstances, maybe they needed more attention. But sometimes, I think they’re just used to me doing it for them. I’m still struggling to figure out where the line lies between giving them the attention they crave and aiding and abetting their criminal quest to become lazy couch potatoes.

Continue reading

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Oct 12

Meet Eve, Part 5: Blame & Shame

Welcome to part 5 of this series of posts about Eve, short for Everyparent of an “Easy to Love but Hard to Raise” Child. Eve is an archetype who represents the experience of raising a child with ADHD or other invisible disabilities. She’s revealed in the upcoming book, Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories, which is now available for pre-order direct from the publisher, DRT Press, at 30% off cover price, as well as from amazon.com. In parts 1 through 4 of this series we explored the following quotes from Eve, all of which reflect the pre-diagnosis stage of the special needs parenting experience, from when our children are infants, through the preschool years. Eve says:

“The experience of parenting this child is nothing like I thought it would be.”

“I can’t enjoy playgroup, story time at the library, or other chances to spend time with other parents and kids, because my child’s behavior is too hard to manage.”

“I expected standard discipline tactics to work, but they just don’t. I seek out new parenting strategies, but they don’t work either.”

Continue reading

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