Sep 18

Sleep, elusive sleep – 10 alternative non-prescription sleep solutions

poor_sleeper_tipsMy son – and therefore, the rest of his family – has struggled with sleep since he was a baby. When we adopted him at 15 months I had planned to sleep in his room with him to encourage attachment, but it didn’t take long to realize that my presence was not soothing to him, but exciting. If I was in the room he wanted to stay up and play. If I wasn’t in the room he wanted to stay up and play! We quickly figured out that he needed a very quiet, calm, and dark space to sleep, although even with that he still had trouble,

We’d put him to bed at 8, he’d yell (not cry) for 4 hours, fall asleep around 12, and was up by 5. Even after sleeping only 5 hours he wouldn’t nap during the day, and although he got very wild and dysregulated because of lack of sleep, he didn’t get cranky or grumpy, which was a positive, although I’m sure that 5 hours a night wasn’t especially good for his little body. I know it wasn’t good for me. I’m a light sleeper, so even though J was in his crib, and later, in his room with a baby gate keeping him safe, when he woke, I woke. When I asked our pediatrician he talked to me about sleep hygiene, like keeping a good routine, doing calming things before bed, and making sure the child is comfortable, but I had already tried all that and felt frustrated. I was very thankful when another doctor suggested melatonin, which was immediately effective in helping flip whatever switch led to sleep.  Continue reading

Nov 24

If Mama Ain’t Happy…

This is a re-post of a speech I gave to welcome everyone to the 1st Happy Mama Conference and Retreat, first held summer of 2012 in Conover, NC. It’s a great retreat and is still going on!

I’m reposting the speech for a couple of reasons. One, because even though several years have passed, none of the challenges I and so many of my fellow mamas of children with NB special needs have changed, and two, maybe more importantly, the core message of this speech is still CRUCIAL for us to remember: you are not alone.

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I’m Adrienne Ehlert Bashista. Some of you might know me from our group blog and book: Easy to Love but Hard to Raise, or through the Facebook page connected to it, or through A Mom’s View of ADHD blog or Facebook page, or some of you might not know me at all.

I have a 10 year old son who has fetal alcohol spectrum disorder, or FASD. I’m not going to talk that much about FASD except to say that it’s a brain-based disorder that manifests itself behaviorally. It’s a physical disability because it is based in his body, but it’s in the part of the body we don’t see, the brain, but the part of the body that has the greatest impact on his behavior, his learning, his ability to get along in the world, and his relationship with his family and anyone else he meets.

Our path to getting our son the correct diagnosis was a loooooong one. His first diagnosis was ADHD, followed by ODD, mood disorder, pervasive developmental disorder, pediatric bipolar, then we found out he has borderline intelligence and finally, after 4 psychiatrists, 3 therapists, 2 family practice doctors, 3 OTs. 1 speech therapist we found the diagnosis that made sense.

For everyone in this room who’s had to struggle to find a diagnosis, whose had to trust her gut more than the experts, who’s taken their kid to very well-meaning, kind, but ultimately ineffective people, who’ve largely blamed yourself for your child’s behavior problems (because in the end, who else do you blame)? I need to tell you this: Continue reading

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.

Continue reading

Nov 07

Bless his heart, or, Meet my ADHD/ODD/PDD/SID/WTHRK (who the heck really knows) boy!

This post is from 2 years ago and was first posted to A Mom’s View of ADHD. I’m bringing it back for a couple of reasons: one, because it shows how far we’ve come, and two, it shows how much things have stayed the same. Since then he’s been diagnosed with FASD (fetal alcohol spectrum disorder), which not only explains a lot, it explains EVERYTHING, he’s calmed down a lot (largely due to our newfound understanding of FASD, as well as him just getting older and more mature) and we’ve pulled him from school to homeschool, which has solved the problem I describe in this post. I also now know that in fact, his refusal to do homework or to participate in class were because he actually could not do the work. His teachers were wrong. So I unfairly judged him on this day…as I am sure I continue to do. It’s very difficult to understand a child who has ups and downs in behavior like J does, who can control himself one minute and be completely out of control the next. He has grown and developed but it’s very much the same situation, different permutation. And so the emotions I have towards him are the same as they were 2 years ago, although I’m perhaps less desperate feeling. Today. I’m less desperate feeling today. Tomorrow might be entirely different.

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At the Piggly Wiggly yesterday I was talking to my favorite cashier, Elaine, about my 8 year old son, LittleJ. “He’s been doing his homework so far this year,” I said as she was ringing up my spaghetti squash, “But he just writes whatever. I don’t know if that really counts.”

“He doesn’t understand it?” Elaine asked. Elaine, in addition to being a fine cashier, is also a mother and was an elementary school teacher’s assistant before she retired and became my therapist a grocery store clerk.
“I don’t know,” I admitted. “He doesn’t read the directions or the problems and I don’t know if he can read it and is choosing not to, or if it’s because he’s off in space” here, I make a motion with my hands to indicate my child shooting off to the moon, ”or if he actually can’t read it.” Indeed, my children’s teachers so far have told me that they think he’s capable of doing the work…but he just doesn’t. At home we see glimpses of ability, but only if we sit with him, and when we do that it’s less likely that he’ll actually focus and do the work and more likely that he’ll take the opportunity to push my many buttons, say mean things, cry, or pick his nose. Continue reading
Apr 11

An omen

Yesterday I backed my car directly into my husband’s pick-up truck. Don’t worry, no one was hurt, but it’s highly likely I broke his truck’s front axle, which will cost us a bundle. Then right after I smashed into his truck I shut my sunglasses in the car door, snapping them in half.

This morning at 7:30 a.m. I realized in a panic that I needed to leave to take my son to his carpool drop off…at 7:30. And I hadn’t even gotten him out of bed yet.

When things like this happen, especially when they happen in clusters, I see them as a sign I need to step back, get some perspective, and figure out what the heck is going on. Continue reading

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

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

Jun 28

Summer Vacation with ADHD: Is That Possible?

Gershwin’s popular tune “Summertime and the Livin’ Is Easy” may capture the season’s tempo for many, but it does not characterize summers with an ADHD child!

Our little hurricane longs for school-free days, but when it actually arrives – he’s a shipwreck. Without the forced structure of school he quickly unravels and becomes much more difficult to manage, to say the least.

During the adjustment period, routine tasks like getting breakfast (or anything that’s done at a different time than usual) become an all-out battle. Before 9 a.m., I am an exhausted wreck and he’s angry and confused.  This is why medication breaks don’t happen over summer or other school holidays. Tragically, none of us can get through much more than one medicine-free day with him. His inattentiveness and impulsivity drive us to distraction.

Learning never really takes a holiday either. With virtually no short-term memory, he must practice skills throughout the summer. Summer school is ineffective, as the learning is gone by day’s end and it typically ends with six weeks of summer left. So, reading, ‘riting and ‘rithmetic, continue throughout the summer. While I try to make it “fun,” he knows it’s a drill. Plus, it makes his “differences” painfully obvious when his older sister is not doing math facts and reading sight words to earn TV or computer time.

Computer camps – his favorite instant gratification/stimulant-seeking pastimes – swim team, and amusement parks fill in the gaps and provide some sense of order. This year, as I tell myself every year, will be better. I have joined the “if you can’t beat ‘em, join ‘em” camp and embraced digital learning. We’re trying two programs:

  1. Didj Learning Edge by Leapfrog, www.leapfrog.com, will replace paper and pencil math facts practice. The hand-held Didj drills players on their math facts, rewarding them with online games such as Android Invasion that lets them be their favorite characters, including my all-time nemesis, SpongeBob Square Pants.
  2. CogMed is a five-week computer program designed by the Karolinska University Hospital of Sweden to improve working memory, a major component of the behaviors that accompany those with ADHD.  (See www.cogmed.com/trainging-of-working-memoryfor more information about how this program improves academic and everyday functioning.)

The program includes 25 sessions, 30-40 minutes each, that trains the brain to exercise its working memory muscles. “Stanley” the robot guides users through the exercises and rewards effort with a “Robo Racing” video game at the end of each training session. As I write this, hurricane boy just finished his first session. The video game aspect has great appeal, so we’ll see how it goes as the training becomes increasingly challenging. I can already see how the games will push his sequencing and memory skills and how he’s already learning from his mistakes, without too much frustration, … yet. Still, I remain encouraged.

Another attractive feature is the ADHD coach who comes along with the $1500 fee. She explained how the program works, got us online, and calls us once a week to check-in and keep Hurricane’s motivation up.

Behavior modification is part of the package as well. A rewards poster keeps us on track to earn a “prize” after each 5-days of training. He’s picked two no-cost rewards (going to night swim practice, having friends come over) and two low-cost rewards (Nerf and Star War toys); a Wii/DS game is the big reward to come at the end of training. Rewards are given on the condition that training is done without major whining, tantrums, etc. My anticipated rewards are:  an increased ability to understand written and oral instructions, and better retention of daily tasks (working memory).

This “fun” digital summer school begins right after we’ve returned from an 18-hour (both ways) driving vacation to Mount Rushmore and Yellowstone National Parks. As recently as two years ago, I would never have considered this trip. However, the Hurricane was amazing. Of course, it helped that we allowed extended periods of “screen time:” DS Nintendo games and movies on a borrowed portable DVD player. Yet, we did a lot of hiking and lots of driving between scenic locations, which ordinarily would have left all of us running madly into the wild as the Hurricane unraveled before our eyes – waking everyone at 4-5 a.m. by running through the hotel room, repeatedly opening and closing doors, etc. …. Instead, he found a walking stick that fit him and led the way on some strenuous hikes. He had the best bird-watching eyes of all of us and was, overall, a joy to have along. When the driving became too much, he made a fort in the back seat with his blanket, and presumably shut out the rest of the world. Despite Yellowstone’s remarkable beauty, his favorite part of the trip was Mount Rushmore, as the faces were much bigger than he imagined. Awesome, Hurricane. Thanks for a great summer vacation.

May 27

Mysterio

For my son, Harry, on his 23rd Birthday

“Learning disabled,” he said, “but bright.”
ADD, auditory tests, meds, therapy,
The doc’s toy animals smile from the shelves,
All the mystery of my son made simple, tied up tight

I chafe at labels, fear for stigma you’ll face,
But none of that noise touches you,
At your own speed, you grasp what sparks to you,
Indifferent to the ranting rivalry of the race

Now you’re off on your own,
On your first birthday away from home,
You’ve slipped free from my worrying arms,
And you’re working, laughing, grown

But back at Big Bear Lake you were nine
In the rented boat, poles out, lines in, quiet as monks
We drank cokes and waited for fish,
As our bobbers winked in the lake’s midday shine

At the lodge, laughing, we fell into a TV magic show,
Sharing Oreos as Mysterio’s cape made big things disappear,
That cape covered us too, and snapped us away into today
But my son, my mystery, you remember, I know.

May 19

HELLO! My name is: Eve, Part One: What were you expecting?

When I was pregnant with my first child, I spent untold hours with my nose in the book What to Expect When You’re Expecting.

Throughout my son Aaron’s first year of life, What to Expect the First Year was always close at hand, on the table by the rocking chair where I fed Aaron, sang to him, read to him, and rocked him to sleep for naps and bedtimes. Then, before I knew it, I’d switched to What to Expect the Toddler Years.

Sound familiar? Do you remember those days? Wasn’t it magically reassuring to follow along—and even read ahead–in books that
explained every stage of development, and answered every possible question—sometimes before we knew to ask it?

Things were different with my second child. She gestated on the other side of the world, in the uterus of a stranger. She probably didn’t benefit from prenatal vitamins, and regular check-ups by a smart, charmingly shy young OB/GYN. She wasn’t carried to term, and delivered in a clean, modern hospital. She didn’t spend her “First Year” and “Toddler Years” cared for by loving parents, extended family, and Millie, at her in-home daycare, when Mom worked.

We adopted our second child, Natalie, from an orphanage in Russia, when she was 2 ½ years old. The stark realities of suspected prenatal exposure to alcohol, a premature, unattended birth, malnutrition, lack of stimulation, and disease contrasted bleakly with the happy, healthy, normal development of her big brother, our birth child. When we brought Natalie home, there was no way to know “What to Expect.” The guides to parenting this child, though insightful, described a process of development and an outcome—a reality–that I was unwilling to accept for my new daughter.

Eight years have passed since I began parenting this child, with no official guide. Aaron has continued to thrive; surpassing expected
developmental tasks at every stage. He plays baseball and basketball, gets good grades, and enjoys a great group of friends. Natalie has made amazing strides too, and is a loving, engaging, spitfire of a child. But, Natalie has ADHD with a handful of comorbid conditions. I research and network daily, in hopes of finding any useful parenting guidance at all, much less a comprehensive, reliable, accurate parenting guide.
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Your personal story is likely quite different from mine. But, if, like me, you are parenting a child with special needs, then, at some
point, your child also strayed significantly from typical developmental,behavioral, or academic norms. So you know how it feels to go without a guide, into uncharted parenting territory. Frightening, anxiety provoking. Desperate.  Exhausting. Confusing.

What if I were to tell you that there’s a woman you can turn to, who will share her personal story of parenting a child with special needs, and that her story will predict and explain the many feelings, stages, and experiences that you will likely go through in your special needs parenting journey, from the time your child is an infant through early adulthood. This woman, Eve, isn’t real—she’s an archetype; a construct–all the more “real” for having grown from the truths-in-common of 35 such parents who contributed their stories to our upcoming book Easy to Love but Hard to Raise. (http://www.drtpress.com/) How might you feel to “meet” this woman; Eve? Relieved. Reassured. Empowered. Less isolated and alone.

In the next post in the ongoing series, it will be my pleasure to introduce Eve. To be continued…

(This post first appeared on Spruce Kids {Blog}.)