Sep 05

Repost: You are not alone!

This is a repost from the spring. Since then, much has changed in my life, but this feeling – that I am not alone, never alone in my feeling about being the mother to a child with sometimes baffling behavioral special needs – is still ever present. Since April, when I first wrote this, our blog readership has almost doubled, our Facebook community has literally doubled, and more and more people every day are finding us. As the person who runs this blog and Facebook page I’m faced with the need to accommodate our Easy to Love family by creating a forum – one where folks can post anonymously, if needed, but also a place where we can grow as a community.

In any case, I thought this was a good post to re-share at this time of community growth. This was the first time I talked to a group of parents about my experiences raising a child who is easy to love but hard to raise, and it was a powerful experience for me.

Thursday night I had the privilege of speaking to a group of parents at the Chesapeake Bay Academy, a special needs/learning challenges school in Virginia Beach. I was invited there to talk about our book. I thought long and hard about what I should say to these parents. I didn’t want it to be a book infomercial. I also didn’t want to read a lot, since listening to someone read is kind of boring. But I wanted to convey the main message of the book: as the parent of a child with an “invisible” special need, you are not alone. Continue reading

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.

 

Apr 24

You are not alone

Thursday night I had the privilege of speaking to a group of parents at the Chesapeake Bay Academy, a special needs/learning challenges school in Virginia Beach. I was invited there to talk about our book. I thought long and hard about what I should say to these parents. I didn’t want it to be a book infomercial. I also didn’t want to read a lot, since listening to someone read is kind of boring. But I wanted to convey the main message of the book: as the parent of a child with an “invisible” special need, you are not alone.

So I decided to tell my story. Of course, my story as the parent of a 9-year-old with FASD is unique to my family, but so much of what we’ve gone through other people have gone through, too. The structure of the book: first glimpses, searches for treatment, problems with school, impact on family/friends/village and family/friends/village’s impact on us, and acceptance leading to a possibly uncertain, but hopefully hopeful, future, is basically the story of us, with the future part to be determined as life goes on.

One thing that came up as I wrote out my presentation, and which became even more solid once I started to speak, is that this idea, the idea that I AM NOT ALONE has not always been with me. Continue reading

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.

Feb 07

Is your child Easy to Love, but Hard to TEACH?

You spoke, we listened! The folks who have created Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories, are now seeking submissions for the next book in the series: Easy to Love but Hard to Teach!

If there’s one thing all parents of kids who are easy to love but hard to raise share, and that’s a problem with SCHOOL. Our square pegs just don’t fit into the round hole that is traditional education and it’s a daily struggle in many of our homes to find a way to make peace with how to get our kids to learn to read, write, do math, get along with kids, and to avoid the dreaded call…

We are seeking essays from parents, teachers, administrators, guidance counselors, experts, and anyone else involved in the process of educating children with brain-based disabilities like ADHD, ADD, ODD, OCD, PDD, PBD, ASD, FASD, SPD etc. etc. We are not looking for how-tos, but essays about your feelings as caregiver, teacher, helped, facilitator.

For full details, please see the call for submissions on our publisher’s website.

 

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

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)

Jan 09

An Unfinished Essay (That Needs a Happy Ending)

 

Aaron & Natalie at their cousin's wedding, June 2011

 

Even though I co-edited the book Easy to Love but Hard to Raise, and thus had an “in” as far as having a piece accepted, I didn’t submit an essay for inclusion in the book. I started to write an essay, but I never finished it. One reason was that I was too busy editing other people’s essays to have time to work on mine. Believe me, that was a valid reason.  But I also got caught up in not knowing how my essay should end. Maybe that’s because the real-life saga at the heart of my essay is still very much a work in progress, a sad fact that became all too clear last Sunday night.

A situation developed that led my 15-year-old neurotypical son, Aaron, to express feelings of hurt and resentment about how he’s treated by his dad and me, in comparison with his sister, Natalie, our 11-year-old who has ADHD and comorbid conditions.

Continue reading

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

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?

    Continue reading