Jan 09

Be the patience you want to see

single_penguin

This is an excerpt from The Resilient Parent: Everyday Wisdom for Life with Your Exceptional Child, by Mantu Joshi. Mantu is the father of three children, a minister, stay-at-home dad, and a writer. The Resilient Parent offers short person essays to help us reframe the experience parenting children with special needs so we can be more resilient parents!

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I hate transitions. I hate that I cannot just beam my children from activity to activity like in Star Trek, or get them from the minivan into the house by wiggling my nose like Samantha in those old Bewitched episodes. No, we have to physically get from point A to point B, which means that someone is likely to throw a tantrum. Continue reading

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Dec 01

Oppositional

no

This is a re-write of a post I first published on this blog about 2 1/2 years ago. At the time I was just starting to understand fetal alcohol spectrum disorder (FASD) and what it really meant for my son and my family. 

The first time I wrote this I was coming to an understanding of what “NO” meant when my child said it. I had started to see that it wasn’t simple opposition. I still saw it as him trying to get negative attention, which isn’t my current interpretation of his behaviors. At the point I wrote the original post I was starting to understand what actually worked for my child, but I was still missing the WHYs: at that time I didn’t have a very complete understanding of his brain differences and how the NOs fit into all of that. I’ve updated this post to reflect my new understanding of FASD, my child, and the primary and secondary characteristics of FASD.

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My child has a default setting, and it is NO.

If I didn’t know better, I’d say he had ODD, or oppositional defiance disorder. Many experts – psychiatrists, psychologists, therapists, and others – have suggested he has ODD in the past. He certainly has all the characteristics – but in reality he has FASD, fetal alcohol spectrum disorder. What looks like ODD is a result of chronic frustration from living in a world that expects “typical” behaviors from an atypical brain. Saying NO is what he does when confronted with people expecting more from him than he can actually do. Being angry and sad and frustrated are actually normal responses to chronic misunderstanding. So labeling him with ODD is not very useful as it doesn’t lend understanding. It simply describes behaviors. It doesn’t look at the WHYs, and I’m not sure that it looks at the WHAT-TO-DOs. In my experience, understanding the WHYs is what drives the WHAT-TO-DOs.

So here are the WHYs:

When I, and other people who train about FASD and the brain, talk about FASD we often split up the behavioral symptoms of brain dysfunction into 3 different groups. This is based on research done by Ann Streissguth and others, and described by Diane Malbin, my mentor and trainer.

First are the primary characteristics of FASD. These are directly related to brain differences and although they vary from person to person, they include slow processing, problems with memory, sensory differences, impulsivity, developmental lags, or dysmaturity, difficulty with language and communication, poor executive functioning, and difficulty with abstract thought. Each of these brain functions show themselves behaviorally. The person with slow processing may not be able to answer questions quickly, which might look like the person is ignoring the question, or ‘not listening.’ The person who is dysmature and who has language difficulties may be able to superfically engage in conversation at his/her chronological age (due to mimicking or good expressive language skills), but may have little understanding of the content of the conversation, leading others to believe he/she is “getting it” when they are not. Later, when the person with FASD is supposed to remember the conversation or apply what he or she has learned and cannot, it is interpreted as deliberate and willful disobedience.

We help the person with FASD by understanding brain differences, accommodating their very real physical disability (because the brain is part of the body, right?), and structuring their environment for success – just as we do for any other physical disability. We quit assigning motive for what they cannot do. We give them the benefit of the doubt.

Secondary characteristics – like what looks like ODD – are behaviors that result when primary characteristics are misunderstood as being on purpose, intentional, or manipulative. If a person’s needs aren’t met, that person gets frustrated, angry, and shuts down. If this happens time and time again, and if that person is punished for things he or she simply cannot do, frustration and anger increase exponentially. This is a normal response to having one’s needs be unmet.

Tertiary characteristics of FASD are the very unhappy endings of chronic misunderstanding and frustration: jail, homelessness, addictions, and hospitalization.

It’s really important to understand FASD in this way – it’s not a mish-mash of all the symptoms. It’s not an inevitability that the person with FASD will become an addict or have to go to jail. It’s primary differences in the brain, what happens when those differences aren’t understood and needs aren’t met, and what can happen when those needs aren’t met over a long period of time.

Let me explain, using my child, and all his NOs, as an example.

  1. Primary characteristic: he is highly impulsive and so often says the first thing on his mind. Because he often can’t do as asked, the first thing on his mind is often NO, whether or not he is able to meet the request.
  2. Secondary characteristic: he is fearful and anxious about new things, and this expresses itself by a rejection of new things, leading to NO.
  3. Primary characteristic: he has trouble processing situations and conversations rapidly. He uses NO as a place-holder, a way to buy himself time to understand what’s being asked of him.
  4. Primary characteristic: he’s dysmature, so while many children outgrow the NO at age 4 or so, he’s really not there yet.
  5. Secondary characteristic: when he’s feeling most frustrated, he combines the NOs with name-calling, the phrase, “You are mean,” and sometimes crying and tantruming and throwing things to  communicate how he’s feeling.

The primary characteristics are how his brain works. The secondary are the reactions to dissonance between expectation and reality. We can’t change the primary characteristics, but we can change our OWN REACTIONS to the secondary and change his environment for better success.

Here’s how this works in real life:

Continue reading

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Nov 24

If Mama Ain’t Happy…

This is a re-post of a speech I gave to welcome everyone to the Happy Mama Conference and Retreat, first held summer of 2012 in Conover, NC, and summer, 2013 in Raleigh NC. We’re currently working on its next time/location, so stay tuned (and friend us on Facebook for all the news).

I’m reposting the speech for a couple of reasons. One, because even though almost 2 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

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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?

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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

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Sep 16

When The Other Generation Is Easy To Love But Hard To Raise

old-63622_150I love my dad – more than I can describe. He’s always been there for me, always the first to offer a hand when life threw me a curve ball. What he lacks in outward emotions he makes up for with ready offers of support and a safety net of stability. But my dad is growing old – very old. He is stone cold deaf without his hearing aids, his eyesight is failing, his knees are shot, his 89 year old body is tired. His diuretic makes him reluctant to travel too far from a restroom or take too long a car ride. So by this past spring, his trips beyond the house consisted mainly of doctors’ visits and a weekly card game at the senior center. My mom, his wife of 63 years, died three years ago. Dad misses her constantly. You can see it in his eyes. A religious man, he wakes up each morning just a little disappointed that his prayers weren’t answered and they weren’t reunited during the night.

After my mom died, my dad moved in with my sister. Because I live 600 miles away, I started calling him once a week when I knew my sister was out – I figured he could use the company more on that night and he could also talk louder without bothering anyone. He did most of the talking – generally idle chatter with the occasional talk about memories, the afterlife and once in a blue moon, his feelings. But when I called a few months ago, I sensed that something was different. Something in his tone wasn’t right. He told me that he was moving out of my sister’s house and into an assisted living facility. My sister had told him she could no longer care for him.

Continue reading

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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

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Sep 06

OCD goes to college; Mom stays home

I have just transitioned from being a full-time mother to being the long-distance parent of an undergrad. Just another college mom mailing off care packages, right? Wrong.

My eighteen-year-old has battled obsessive-compulsive disorder (OCD) for most of his life. It waxes and IMG_1762wanes, but it’s always there. Lurking. OCD is a crippling anxiety disorder that loves to hide in the shadows. If you met my son, you would describe him as smart, funny, charismatic, empathetic, drop-dead gorgeous. An award-winning poet and musician, he’s a straight A student with tattoos, rock star hair, and a killer smile. You would never guess he manages an invisible disability.

A week ago we waved goodbye outside his dorm room, and my husband and I started the ten-hour drive home—in silence and tears, followed by my strange desire to listen to The Monkees. (Some weird throwback to Shrek?) I’ll be honest, the next few days sucked. Continue reading

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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

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Aug 09

Dreaming of 5 am…..

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When you ‘complain’ that your child is not sleeping, most people assume that your child maybe has a hard time falling asleep. Or maybe your child is awake earlier than you would like. Sometimes, it is a much bigger issue.

Like most parents, we stumbled through that phase in infancy when our children were awake every 2 hours – sometimes even more often. It was completely exhausting. For us, this phase went on a little longer than most. It went on for YEARS. It is STILL going on. Parents of ‘typical’ children cannot fathom some of the struggles that parents of ETL children face on a daily basis. There are always the parents who attempt to sympathize  – letting you know little Johnny was up at 5 AM. Continue reading

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