May 19

FASD 101/Our story

adrienne_slideFASD stands for Fetal Alcohol Spectrum Disorder. In-utero exposure to alcohol is the number one preventable cause of developmental and intellectual delays in this North America. Conservatively, FASD impacts 2-5% of all births, and causes permanent, irrevocable and untreatable brain damage. For children in foster care or who are adopted from Russia or Eastern Europe, the number is at least 17%, and may be as high as 70%. A person with FASD is likely to need services and support  for his or her entire life. The lifetime cost for these services can be 2 million dollars.

My almost 12- year old son is handsome, intense, funny, strong-willed, loving, and he also has FASD.

If you met him you’d think he was darling.  Big green eyes, wavy blond hair. Nice manners – at least in public. A great fisherman. A good conversationalist – at least with adults. We love him. Clearly. But if you know anything about FASD at all, you know that because of brain damage that occurred when his birth mother consumed alcohol during her pregnancy with him, he is very, very difficult to parent. If you didn’t know him like I do, you’d think he was oppositional, defiant, manipulative, angry, and poorly behaved. You’d call him immature, a liar, and a thief. You’d think he was spoiled, lazy, and out of control.

None of that is true.

None of this is his fault, but he gets blamed. None of this is my fault, as his mother, but I get blamed. His behavior can sometimes look like the result of bad parenting. But it’s not. Far from it. He has brain damage. He is disabled. But you sure wouldn’t know by looking at him – which is more of a curse than a blessing, if you ask me. He looks “normal” so people, including me, expect that he should act “normal.” But that doesn’t happen very often. Or at least not with intense effort.

FASD is a spectrum disorder, meaning that some children are extremely impaired and in others it’s not as disabling.  On the far, most disabled end of the spectrum are people with profound intellectual disabilities and/or serious physical problems. On the less disabled end are children who look perfectly “normal,” but whose behavior and ability to function is more like someone half their age. Some children with FASD have low IQs. Some have high IQs. All are developmentally delayed and most have difficulty in adaptive behavior, which is what determines a person’s ability to be self-sufficient.

My son doesn’t have any of the serious overt physical impacts caused by FASD, except for some subtle facial features that 10% of folks with fetal alcohol exposure also share, but he has every brain-based impact of the disorder. Doctors have diagnosed him with ADHD, Sensory Processing Disorder, Oppositional Defiant Disorder, poor working memory, mood disorder, developmental delays, borderline intelligence, and slow auditory processing. Despite that list of diagnoses, the reality is that all of these behavioral labels are part of the brain damage he experienced in utero. Instead of looking at each separate diagnosis it’s far more useful to look at his brain as a whole. The brain controls behavior. His behaviors are symptoms of his physical disability. 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

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

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!

Feb 22

Guest post: A Letter to the Future Teacher of My Exceptional Child

 

always_believe

Dear Teacher,

My son will be entering kindergarten this fall. Two years ago, I used to envision myself dropping him off for his first day of school with a tremendous sigh of relief. I would bring him to your classroom, where he would run off and be engaged in any number of different activities, and I would then head over to the Boo Hoo Breakfast, where all the other parents would lament over where the time had gone and I would pretend to be nostalgic but inside just feel relief. This was the fantasy I indulged in until a year ago. I figured I was like a mother giraffe that kicks its calf onto its legs until it staggers into survival. Now I know that when I leave him with you, there will be no great relief. Every day that I send him into the tribe is a day I worry about how he is doing, what he is doing and how you are doing with him. When my phone rings or my inbox has an e-mail, my immediate thought will be, “It’s about him.” Continue reading

Feb 08

Guest post: Autism and My Child: Getting Familiar with What I Already Know

Mama Bear is the mother of 3 young boys, the oldest suffering from Bipolar 1 Disorder and the youngest diagnosed with depression and possible Aspergers Syndrome. I write a blog to let go of my pain and to help support others by letting them know they’re not alone. Her blog is here: http://mysonhas2brains.blogspot.com/

mapMy recent experience in having my youngest son assessed for autism spectrum disorder has taken me for a bumpy ride. At first, I went through a period of grieving that made it hard to eat and sleep. This was surprising since I never went through this stage with my oldest son when he was diagnosed with a mood disorder. Sure, I was devastated at times, but I didn’t struggle with a feeling of loss so abruptly. I think it was due to my desperate need for my oldest son’s rages to stop and my understanding early on that he had a brain problem. Where with my youngest, I had always believed it was just a stage that he would eventually outgrow. Next, I struggled with my guilt and shame for not seeing my son’s symptoms sooner, I felt like a terrible mother who now had 2 kids cursed with a disorder. As I started getting down to business, preparing for our appointment with the Neurologist, I was forced to face all the unknowns and to explore a world I was unfamiliar with. What followed was a long, slow exhale and a feeling of peace. Continue reading

Dec 12

Holy MTHFR!

If I say MTHFR, then Methylenetetrahydrofolate Reductase are the two words that pop into your brain, right? No? Well, hopefully after reading this, you’ll see more than that swear word that caught your attention.

If I next mention bipolar struggles, rapid mood swings, depression, anxiety, heart disease, strokes, macular degeneration, miscarriages – and any of these issues hit home for you, then read on, because you might just want to know about MethyleneTetraHydroFolate Reductase – better known by its abbreviation – MTHFR.

MTHFR is a gene and like all genes, it acts as a light switch – turning on or turning off various body processes. In this case, MTHFR takes folate (vitamin B9) and methylates (converts) it into methylfolate (5-methylTHF). Hardly seems like a big deal, does it? Yet, if you belong to an autism, Pandas, Lyme or chronic fatigue group, you’ve probably noticed a big buzz around this thing called methylation. While the past decade has seen MTHFR studied in terms of cardiovascular disease and cancer, it turns out it might also be a very big deal for those raising kids with developmental, neurological or behavioral symptoms and for those fighting chronic infections.

Methylwhat?

Continue reading

Nov 17

The Village (You are NOT alone)

There are literally hundreds, if not thousands of people who are involved in my child’s life. At the same time I think it’s really easy to feel isolated as the parent of a child with the type of special needs that my son, Little J, has. His over-arching diagnosis is Fetal Alcohol Spectrum Disorder, or FASD, which includes behaviors similar to ADHD and mood disorders – what some people, including me, consider to be “invisible” disabilities.

If you are parenting a child with an “invisible” disability, like I am, and you go out in public and your child has a tantrum or an outburst or rages or otherwise acts up, you are instantly judged as a bad parent. People just don’t understand a child who looks perfectly “normal”, yet whose brain-based disabilities impact behavior and emotional regulation. I cannot tell you the number of times I’ve been told that I just need to spank my child – by perfect strangers and acquaintances alike. Family and friends don’t get it, and although they may care about you and your child they can also be quick to judge – based on assumptions they’re making about your parenting, or about witnessing isolated incidents, or through caring for your child for a couple of hours when he was “perfectly fine for me.” Professionals – even those whose profession is helping a child like yours – need to be educated about your child. And support is hard to find. Add that to the exhaustion and unrelenting stress of trying to find answers to your child’s problems as well as the day-to-day management of your lives and it’s easy to become a hermit. A lonely, stressed-out hermit. Continue reading