Category Archives: FASD

Nov 27

Happy birthday challenge: help me raise money for FAFASD!

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If you follow this blog then you know that my 10-year-old son has FASD, or fetal alcohol spectrum disorder. FASD is caused by prenatal alcohol exposure. It is brain damage. It’s irreversible and while some medications and therapies can be helpful, it’s nothing that can be cured or fixed. In fact, the most effective intervention for FASD is a  supportive, educated family. Period.

The key is the family.

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People with FASD manifest their brain damage behaviorally. They have trouble with cause/effect thinking, so parenting techniques that involve reward or punishment don’t work very well. They often can’t regulate their emotions, so outbursts and anger are frequent. They feel frustrated because their brain works slower or different. They are developmentally delayed. My 10-year-old acts more like a 5-year old, for example. They may have problems learning in school, and they certainly often have problems socially.

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People with FASD are intense. It takes a lot of effort to care for people with FASD – and in many cases, caring for people with FASD goes on well into adulthood. For parents of kids with FASD this is a labor OF LOVE. Understanding the disability is KEY to success.

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Despite the overwhelming prevalence of FASD (current data says 2-7 per 100 children born in N. America) there is very little parent support. VERY LITTLE. Current efforts to raise awareness are focused almost entirely on prevention. Prevention is important, but for those of us caring for a child with FASD it is too late. We need support NOW.

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I am starting a non-profit organization to support families caring for someone with FASD. Our goals are simple: to provide support, training, and to raise awareness for families impacted by FASD, including parent retreats and family camps.

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I need your help. I can’t do this alone, nor can I do this without start-up funds. Please consider donating to FAFASD. A birthday present, if you like! $10 or $20 or $100 – any amount will help.

Our initial goal is $10,000. We need this amount by MARCH. Please help NOW. DONATE.

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Nov 07

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

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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 →
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Sep 12

Why we quit school…again: homeschooling my special needs child (how we got here in the first place)

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My son, Little J, is 10 years old. If he was in school technically he’d be in the 4th grade. I say “technically” because he’s nowhere near that level, educationally. If I had to guess – and at this point it’s a guess since all our current testing data says what he CAN’T do, versus what he CAN – I’d say he’s around beginning 2nd  grade level for literacy, and beginning 1st grade for math.

J has FASD, or Fetal Alcohol Spectrum Disorder. FASD is largely characterized by behavior. Because of J’s processing speed,  poor working memory, developmental delays, and cognitive difficulties he can appear oppositional, immature, and forgetful. He has a number of strategies he’s developed to buy himself time and not reveal that he’s having trouble. These include calling names, saying “no!” destroying his work, becoming frustrated, and downright refusing. These things “read” as J purposefully being difficult, but really, they’re just him managing his frustration. Most of the time if you can wait a beat and not react to these behaviors he’ll comply with what you’ve asked. But you have to wait a beat.

He is a hard kid to have in class. Continue reading →

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Sep 12

Part 2: Homeschool, the Special Needs School, now back to Homeschool.

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Here’s part 1: Why we quit school…again: homeschooling my special needs child (how we got here in the first place)

image by flickr user sheeronSo we homeschooled. It was rough. The learning curve – MY learning curve – was steep. I was spending 24/7 with a child who had major behavioral difficulties and who really needed to be watched like a hawk with almost no respite and a heart full of worry and fear and anger and exhaustion…and even though I tried really hard (read about that here), I burnt out. We both burnt out. You can read all about that here.

The great homeschool experiment was last year: 2011. In January of this year, after being rejected from the special needs private school closest to our house, we enrolled J in a different special needs private school. An hour from our house.  And I mentioned private, right? Which means TUITION. Continue reading →

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Sep 05

Repost: You are not alone!

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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 →

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Aug 14

If Mama Ain’t Happy, well…

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This is the speech I gave to welcome everyone to the Happy Mama Conference and Retreat, held a couple of weeks ago in Conover, NC. We had an amazing time and we will definitely be doing it again. I’m sharing the welcome speech on the blog because I think it will resonate with all our readers. Remember, you are not alone.

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. Continue reading →

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May 21

Feeling Bitter and Taken for Granted. GRRRR!

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Man oh MAN I’m in a foul mood right now. Angry. Sad. Bitter. And jealous. Here’s what happened that brought it all to the front. Not really THE REASON, but the trigger, if that makes any sense.

This morning I took Little J to his school’s speech therapist’s house for a 2-week intensive therapy session she’s doing with him and another child. He goes to an independent school for kids with special needs and we are really lucky that they are able to think outside the box and do things like this with him and the other kids when it’s possible. He’s there to be company for the other child, to be observed outside the setting of school, and to do focused listening therapy in the hopes that it will tell us something about his auditory processing issues.

I am all for this experiment, but I’ve quit holding my breath in the hopes that this – or any other therapies or medicines or treatments – will have any real, positive effect on him. FASD, or fetal alcohol spectrum disorder, is brain damage caused by alcohol exposure in utero.

Brain damage is brain damage is brain damage. Which doesn’t mean he can’t learn, but that his learning is limited. Slower. If the corpus callosum, the area of the brain that takes messages back and forth between the 2 halves, is small or even nonexistent, and the front lobes aren’t fully formed, which is what we suspect is going on with J based on his medical history and behaviors, there’s no documented treatment that can regrow or re-form those portions of the brain.

So when the speech therapist talks about ‘building new neural pathways’ in a brain that has serious, serious deficits, especially using techniques that have no research in connection with FASD (which isn’t saying much, honestly, since so little has been studied about therapies for people with FASD), I smile and nod, but I’m no longer hopeful. I’ve come to the bitter part of acceptance of my son’s disabilities. The part that most parents of kids with special needs don’t talk about. The part that’s tinged with grief.

So now you know my frame of mind, here was how this morning went down. I got up at 6 so I could make breakfasts and get everyone cleaned up and out of the house for 7:15. When J wakes up he is grumpy and rude, and I was called “bitch” and “idiot” and screamed at a couple of times for telling him to wipe milk off his face and to find his socks.  In between screaming at me he stops, smiles, and runs face-first into my body, saying “hugs.” When he does this sort of thing I find it really hard to reciprocate. At this point in my morning I am just trying to survive. Physical affection towards someone who has been, frankly, verbally abusive, is not top on my list.

While getting him and his brother ready I also had to watch the dogs – J has been bothering them recently. Not in a sadistic way, but in a ‘I’m stronger and bigger than you and I’m going to haul you around and tie you up’ kind of way, if that makes any sense. I really, really, really don’t like it when he does this to our dogs and I’m always on edge when he and the dogs are in the same space. And before you tell me to change the spaces they’re in, please realize that sometimes I have to do things like put on clothes and use the toilet, and the child is perfectly capable of letting himself outside so he can chase the dogs around the yard.

Anyway, we all get in the car, I drop J’s brother off, and J and I head to the therapist’s house, which is 50 minutes away. About half-way through his Kindle stops working and he starts smashing it against various surfaces, screaming swears, and making random nonsense noises. And then we hit traffic. And then I really, really, really start to need to pee. Really, really badly. Plus, I haven’t had breakfast and I can feel my blood sugar tanking. I have some hypoglycemia/blood sugar (probably stress-related) health issues that I’ve not been exactly ignoring lately, but I certainly haven’t been paying very good attention to. Suffice it to say I am not feeling great for the last 15 minutes of the drive.

When we arrive at the therapist’s house it’s all I can do to get out of the car without peeing on myself. I mumble hello-where’s-the-bathroom and stumble inside.

When I come out, much relieved, J is smiling and happy. The speech therapist is smiling and happy and uber calm. They talk about doing chores (which J has to be FORCED to do at home) and taking a little walk (again, a FORCED activity at home) and when she asks if she can give J a little snack of salmon or turkey in a while I can’t help it. I blurt, sarcastically, “Good luck!” Because if I were to suggest a snack like that at home it would not go over well. (Which, incidentally, is why J did not eat lunch or dinner the day before – he simply didn’t like it).

But I bet you a million dollars he eats that turkey or salmon. And I bet you a million dollars he will tell her he likes it. And I bet he feeds that dog and takes that walk and is sweet and kind and has a decent conversation with her, the kind I NEVER get out of him, because he’s too busy telling me how mean I am.

So that’s where I am this morning. Bitter. Taken for granted. And super jealous of his speech therapist, who’s getting to experience my boy in a way I never get to.

 

(image by flickr user Lucia through Creative Commons license)

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May 16

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

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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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Apr 11

An omen

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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 →

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Feb 14

An (un)Happy Valentine’s Day morning

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When I signed up to write a Valentine’s Day blog post on this blog, I truly intended it to be a list of all the ways I love my little bundle of joy. Seriously. There is a lot to love, but because of this morning I am not feeling it.

I’m not feeling love. At all. Just tolerance. And only because he’s my child. If he were not my child, if he were a boyfriend or a friend or even someone I was married to or another family member then this relationship would have ended a long time ago.

I know that sounds pretty shocking. I’m kind of shocked writing it. But it’s the truth. Because my child has brain damage due to in-utero alcohol abuse by his birth mother, and because he experience trauma before he came to me, he has some problems with attachment. Not full-blown Reactive Attachment Disorder. Maybe half-blown Reactive Attachment Disorder. Because most of the time he can be a part of our family to the best of his ability, given that he does have significant brain damage and social skills problems and impulsivity and a mood disorder. But sometimes he can’t. Most mornings he can’t. And this morning, oh, THIS MORNING, this VALENTINE’S DAY MORNING, he really, really, really couldn’t.

Here’s how it went down. Continue reading →

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