May 16

Repost: Food is not a four-letter word. Help for picky eaters!

picky_eaterMy son has Sensory Processing Disorder (also known as Sensory Integration Dysfunction). One aspect of the vast range of symptoms of the disorder is that he is a very picky eater. He doesn’t want to try new foods, he doesn’t like his foods mixed together (which means he can’t appreciate my casseroles, soups, and salads), and he doesn’t even want to eat a food that has touched another on his plate. I knew he was sensitive to the textures and smells of foods because of his oral and olfactory sensitivities. But it took some research to figure out that there is much more to it than just that.

He’s thinner than I’d like, especially after a growth spurt, but we’re thankful that so far this problem hasn’t restricted his growth or health. Mostly, it’s just very annoying to me as a parent. I work hard to cook a healthy, tasty meal for the family, and pat myself on the back for not buying fast food or overly processed/frozen items, but it seems his first response is always, “Mom, this is yucky. Can I have a PB&J?” It’s hard to shake the feelings of under appreciation and worry about his health and remember that it’s really about his neurological disorder.

Over the years, we’ve tried to choose our battles, and until lately food hasn’t been one of them. I’d always tried to convince myself that when he was hungry, he would eat, and as long as I was giving him a quality daily multivitamin and healthy food choices, he’d be just fine. That’s still theoretically true for my son now, but for many children with more severe aversions, those labeled Resistant Eaters, this issue can present serious health concerns. It is not uncommon that children diagnosed with other disorders including Autism, Asperger’s Syndrome, and Pervasive Developmental Disorders would also be Resistant Eaters. Continue reading

May 12

Repost: The Critic

contemplationAs much as I think I have “accepted” my children’s learning challenges, I forget that I still have The Critic living in me as well. The voice of acceptance is calm and even soothing at times. It has been cultivated and reflects flexibility and surrender to what is in me and my children, rather than rigid ideas of what “should” be true. “The Critic”, on the other hand, is loud and harsh and, at vulnerable times, unrelenting. Three kids with ADD? Yeah, right! You’re just a bad mother. ADD? Not! Rather, it must be LMS (lazy mother syndrome). Maybe you are imagining all this because you are in the mental health field. Maybe you jumped the gun in terms of assessment and intervention and maybe all this HELP has actually created the problem. Maybe it is your hyper-vigilance with the oldest, the Sudafed you took for a bad sinus infection when pregnant with the second child, or the way the youngest baby turned blue as she left the birth canal and needed oxygen… Or, most benignly, maybe it is just your screwed up DNA.

It does not matter that we have consulted with experts in the field many times over the years to see if the ADD and related learning problems are our imagination, the validation we desperately need to avoid self blame. It doesn’t matter that we have been told that this is genetic or simply how they are wired. I still find myself living with chronic doubt. I don’t like to admit that The Critic is always nearby, but it is. Continue reading

May 02

Repost: Hello, My Name is Eve, part one: What were you expecting?


This repost is by Kay Marner, the co-editor of Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories. Through editing the book Kay found a pattern in the experience of parenting children with neurobehavioral special needs. She frames it as the experience of an everyparent, “Eve.”

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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? 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

Nov 12

Looking for joy! Sometimes us mommas of kids with NB special needs have to look pretty hard…

"Overwhelmed" by Ursula Vernon.

“Overwhelmed” by Ursula Vernon.

So y’all –

I have about a million blog posts in my head. I’ve been teaching a webinar on fetal alcohol spectrum disorder (FASD) based on the teachings of Diane Malbin, a FASD guru, my mentor, and my trainer, and there is so, so much I can share about the experience. It has been very humbling to present research-based approaches to parenting and helping a person with FASD and at the same time be parenting a person with FASD who is intensely complicated and putting all that I know/learned/am teaching to the test.

At the same time that I’m humbled and want to share what I have learned with you, since I believe it applies to all people with neuro-behavioral special needs, not just people with FASD, I am also feeling overwhelmed. Here’s why:

  • Each week I’m doing 2 webinars about FASD/other NB Special needs
  • Each day I parent my child with FASD
  • Each day I struggle with outside institutions (e.g. school) that don’t “get” my child, who read his behavior as a way to manipulate the system and get what he wants. In reality, his behavior is a clue to getting what he needs – which is not what they provide. So hard decisions are ahead for us.
  • Each day I work towards creating a non-profit to help families impacted by FASD: FAFASD
  • Each day I try to find more training opportunities so I can teach people what I know. You would think this would be easy, but people don’t know what they need to know automatically. It’s proven difficult to find training opportunities – even if I offer to do it for free. I’m available, by the way. Just email me: adrienne@fafasd.org
  • Each day I work on writing projects about NB special needs, which is what my publishing company publishes. Our next book is called The Resilient Parent, by Mantu Joshi, a dad to 2 children with special needs, a pastor, and a very wise guy.
  • And each day I log onto Facebook and read posts from parents of kids with NB disorders that occasionally make me laugh, but mostly make me worried and scared because of their desperation. I know we have a great community in the Easy to Love but Hard to Raise Facebook page, the FAFASD Facebook page, and the Mom’s View of ADHD Facebook page, but sometimes it gets to be too much for me. Adding to that the 300 of 500 “friends” I have on Facebook who are parents of kids with special needs and you can only imagine what happens when I log in with my morning coffee.

Overwhelm. I am overwhelmed.

So what’s the remedy to overwhelm? I can take a cue from my child, who routinely gets overwhelmed, which amps him up and makes him wild and uncontrollable. For me it’s the opposite: overwhelm makes me shut down.

I cannot afford to shut down.

When J. gets overwhelmed we remove him from the situation, we distract him, we make sure he has eaten good food, had enough sleep, and let him chill for a while. We try to think of things that will give him joy – but calm joy – not the joy that comes from jumping on a trampoline after eating 5 donuts until 10 p.m. (True story, don’t ask).

I need to do the same. Can’t really remove myself from the situation (although I have been spending less time on Facebook), but I can look for joy. Calm joy.

Now to figure out what that means!

Do you have any ideas?

Sep 18

Shocking the carpool moms…

scribbleThis morning was rough.

J, my 11-year old with FASD (fetal alcohol spectrum disorders) has recently started school after being homeschooled for 2 1/2 years, and while it’s probably our best option out there it is not perfect. He’d be the first to tell you that. I’d be a close second.

We are now in week 4. Weeks 1 + 2 were blissful, week 3 was rough, and now, finishing up the first month it looks like rough is here to stay.

He got up at 4 this morning, then 5, then 7. “You are a f*cking bitch!” he yelled me at 4 a.m. when told to get back in bed.

At 5, “You don’t care about me, you asshole!” He pulled a framed picture off the stairway wall and hurled it at my husband, who was explaining he had to wait until 6 to come downstairs.

At 7: “I hate that fucking school. It is so fucking boring! Get me the fucking salt!” He threw the kitchen chair to the floor. 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

Aug 16

Should brothers and sisters take care of their SN sibling? Where’s the balance?

balanceA couple of weeks ago I was at an event for moms of kids with special needs. I was the facilitator of a group conversation about balancing the needs of the rest of the family with that of our neuro-behaviorally challenged kiddos.

Facilitator does not mean expert or even master of the situation, by the way. I hope I balance things out, but most of the time I feel like I’m failing miserably. No matter what my husband and I do, everything revolves around my younger son and his needs. It kind of has to. He has FASD, and because it’s brain damage caused by alcohol exposure in utero, the best interventions for him are to manage his environment so he can navigate it successfully. He can’t change, so we need to. And us changing = imbalance, sometimes. Fair doesn’t mean we all get the same thing, fair means we all get what we need. And in our house some days it seems like we’re very far from fair. One small person’s needs rule our household most days, although we have developed some work-arounds that help out a little. Continue reading

May 19

Eyes Open

So your ETL, forgets his homework – more than a few times.  Should you help him organize his locker?  Email  teachers and ask for assignments to be sent to you?  Check agenda for fourth time?

Or, there’s  problems with  friends.  Should you check Face Book to see what’s going on?  Should you call parents?

Even worse, your ETL is an adolescent and finds himself in trouble with the law.  Should you help him get a lawyer?  Should you help navigate the consequences or help with fines? Continue reading

May 17

So Easy To Love

4543472022_9ab001f8b7_mLiam is a spirited child, always has been and always will be. I’ve listened to other people who’ve had the responsibility, and what should have been the privilege, of educating and caring for my son voice their complaints about his unruly and uncooperative behavior. At first it felt hurtful to only hear the negatives. I knew how smart he was and how sensitive.

If you couldn’t keep up with him or if your patience was low that day, you were in for a miserable experience. He was full of energy at all times, I think even while he was sleeping! Add him to a group of other little kids and his energy would only increase. By the end of kindergarten, he was extremely frustrated in school. Still, I knew about those small moments of joy when he felt happy or really engaged in constructive learning and playtime.

I read recently somewhere that first born boys end up with two-thirds of the toxins from their mothers in utero. Toxins like lead and mercury that can affect that boy’s behavior later on. A boy like my first born son, Liam. Was this the cause of his hyperactivity, or was it something else, or a combination of a bunch of other things? Was it his diet, inferior social skills, a cry for attention, allergies, bad parenting, asthma, food intolerances, autism, lack of structure at home, sensory issues or ADHD? What else was there? I didn’t know, but I was determined to find out.

Since Liam’s first month at preschool, I have been on a search for answers. I needed information from our pediatrician and advice of friends. I needed support from my husband and family to find ways to help Liam. I scoured books and websites that offered tips, and even researched scientific data for real evidence-based explanations. I don’t have all my answers yet, but I’m learning as I go like all parents! It’s certainly been a roller coaster ride, but sometimes it’s smooth sailing, albeit rarely. I will cherish those rare but rewarding moments because Liam is the kind of kid who’s so easy to love but hard to raise!