Jan 09

Be the patience you want to see

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

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 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 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

Dec 27

Life & Times of a Caregiver

The saying between a rock and a hard place couldn’t be truer than when you’re trying to help someone with mental illness, addiction and/or another condition.  You’ve got your loved one’s irrationals thoughts and need for help and on the other side the bureaucratic red tape of agencies and HIPPA rules alongside of that.  The situation can become so muddled you can feel like you’re watching an episode of “The Three Stooges”, but no, this is your life – the reality of it all.      

A mental health agency’s recorded message states to make an appointment call between 8:00 AM and 10:30 on Wednesdays.  The future client calls – and then calls.  After a time, a new message tells the client appointments have been filled – have to try again next Wednesday.  On the third Wednesday, the client gets through to a person, a real live one, who tells him to make an appointment, he first has to have a referral from a doctor and a physical (because it’s been some time since he’s been seen by a doctor).

The client then tries to find a doctor.  He begins calling a local clinic.  I try to help by calling them first to see if they accept the type of insurance and if they’re accepting patients.  They are taking new patients, and the receptionists says the future client can call the office.  He calls the office; The receptionist says the persons who takes new appointments isn’t there and to call back at 11:00 the next day.  The future client tries for two more days with the same result.  I call the office back and the receptionist explains that appointments for that day have been filled and the future client just has to try back each day. 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

Oct 30

Guest blog: Life in Shadowland (or, Things I Wish People Understood about Having a Child with a Neurodevelopmental Disorder)

This is a repost of a guest post by Kelly Schmidt, written back in July. I’m reposting it because it seemed to resonate with a lot of people. Kelly is mom to Nathaniel, and Ph.D. candidate in a developmental psychology program. For Kelly’s full bio, see the  bottom of her post.

 When Kevin and I were married 10 years ago, we understood that there were no assurances that we would have a child because I have an endocrine disorder that causes fertility problems.  Nobody was more surprised or excited than us when we learned 2 months after our wedding that we were expecting.  I chose the name “Nathaniel” very deliberately because it means “Gift from God”.

Nathaniel has a BIG personality.  His smile is high wattage, his giggle is contagious.  He is scary-smart and has an amazing memory.  Sometimes he is so thoughtful and concerned about others, he takes my breath away.  He has a very strong faith and knows more about the Bible than many adults.  He loves sports (especially basketball), Legos, video games (much to my dismay), and reading (which makes me proud), and his brother Joel.  He likes to draw cartoons, help make pancakes and cookies, and talks about Pokemon and Mario Bros. endlessly.  He is 110% boy.

Nathaniel also has behavioral and psychiatric disorders.  The behavior disorder is called Attention-Deficit Hyperactivity Disorder, also known as ADHD.  The psychiatrist calls his psychiatric disorder a “Neurodevelopmental Disorder” but since insurance companies don’t reimburse for treatment of that, she calls it “Mood Disorder Not Otherwise Specified (NOS)” for billing purposes.  He has some features of bipolar disorder, oppositional defiant disorder, anxiety disorder, and even Aspergers syndrome.  He doesn’t meet clinical criteria for any of those disorders, however, because he is typically not symptomatic anywhere else but at home.

Home is where the explosions occur.  Home is where there is defiance, anger, and violence.  Home is where frustration boils over to punches, requests lead to rebellion, and yelling and tears are almost daily occurrences for all members of the family.  Peace is fleeting.  Quiet, dreadful anticipation of the next meltdown or outburst is the norm. Continue reading

Oct 11

OCD Awareness Week

By Barbara Claypole White

Every OCD Awareness Week, I hug my obsessive-compulsive son—also called the Beloved Teenage Delinquent—and remind myself how hard my family has worked to defeat the anxiety monster. This year is a little different. OCD Awareness Week 2012 is a bitter reminder that OCD returns.

Writing has always been my therapy and my escape from a life framed with obsessive-compulsive disorder. When my son was little and struggling with undiagnosed OCD, I retreated into a manuscript that evolved into my debut novel, a love story with an obsessive-compulsive hero. Last year when I signed a publishing contract for The Unfinished Garden, my son was OCD-free. As my book baby launched into the world, the OCD was back after a three-year hiatus.

OCD round two has been easier and harder. Yes, we have the hope that comes from understanding our enemy. Been there, done that, the T-shirt still fits. But the emotional lessons are tough. We’ve cycled through denial and anger and acceptance.

This OCD Awareness Week, I want to remind myself of the following:

I will never be ashamed that my son has an anxiety disorder. The stigma of mental illness is so last century. 

I will celebrate each appointment with the child psychologist and feel blessed that she is part of our lives.

I will accept that some days my son is too overwhelmed to fight OCD. Even professional soldiers know when to retreat. Regrouping is not surrender.

I will never hesitate to lock myself in the bathroom and cry. Crash and burn, baby. It’s okay to fail.

I will take a mental health day when I need one—away from the people I love.

I will never hide the truth that my son needs medication. If he were a diabetic, he’d take insulin. Why is swallowing an SSRI to boost his serotonin levels any different?

I will never cringe when OCD rears up in public. My son has an invisible disability. Some people will understand; most will not. The ones who won’t? That’s their problem, not mine.

I will never make excuses if my house is in OCD crisis mode. Triage living comes with the territory.

I will always shout to the world that my son is my hero. A brilliant student, an award-winning poet, and a gifted musician, he refuses to let OCD hold him back or define him. It’s his inspiration.

When people ask what it means to be obsessive-compulsive, I will say: Take a fear, any fear, and amplify it to the point to debilitating anxiety. Imagine that fear in your chest, in your throat, in the fingernails that want to claw off your skin. Now imagine living with that fear every second, of every minute, of every hour, of every day. Sometimes it’s background static, sometimes it’s stereo surround sound, but it’s always there, waiting—an allergy to life. Now imagine the courage it takes to fight that fear.

Every day I will recite my son’s mantra, “OCD will never win.”

To mark OCD Awareness Week, I will be giving away a signed copy of The Unfinished Garden. For a chance to win, please enter a comment below with your email address.The winner will be picked at random on Sunday October 14th and notified via email.

Sep 21

Impulsivity and Saving

Impulsivity and saving.  It’s almost an oxymoron.  Except that I don’t think I can carry this “marriage of opposites” off.

Marie thoroughly enjoys working at Auntie Anne’s Pretzels at the mall.  She’s a people person.  The manager realizes this and puts her out in the mall with a sample plate.  She asks EVERY passer-by if he or she would like to sample a delicious Auntie Anne’s pretzel and spouts off her spiel without a hitch.  I watched her one time.  Those pretzel pieces must be glued onto the platter the way she races over to people.  You need to be on the opposite side of the mall to avoid Marie and her pretzels.  She’s also good at hand-rolling the pretzels.  It’s a win-win situation for Marie and Auntie Anne’s.

The only drawback is that she gets a break when working.  And where others would rest during their breaks, Marie shops.  She shops before work and after depending upon her hours.  I try dropping her off and picking her up in a timely fashion and still she finds ways to buy things.  The mall businesses love Marie.  She’s an impulsive shopper and buys things without any forethought just because she has money in her wallet.

This impulsive buying brings us to another dilemma.  Marie doesn’t weed through what she has; she just keeps adding to it.  Then, she feels she must keep all her possessions in her room…including $50 of luggage that she could hide a Shetland pony in.

I realize that it is HER money.  I’m trying to get her to be selective, to stop and think.  I’m also reminding her constantly that she needs to save for the senior class trip to Disney World.  I’m seriously contemplating charging her rent or taxi rates simply to put the money aside in an account in her name that she has NO knowledge of.  Any other suggestions?

Sep 07

Stay at Home Mother: First Day on My New Job

On the upside, I sit in my favorite coffee shop at 10:30 in the morning on a weekday writing for the first time in months. When I bought my coffee a few minutes ago, I put 25 dollars on a gift card (a gift to myself) suggesting that I expect to be able to do this on a semi-regular basis. I wear flip-flops, black yoga pants and a dark green t-shirt. Sun glasses propped on top of my head, I suppose I am wearing the uniform of a stay at home mother and I must say, it is comfy. Just how I like it.

On the downside, I have been weepy all morning. You see, this is the first official day of my new job. For the next two years I have walked away from paid employment. I am someone who hopes not to lose my mind, someone who hopes to improve on the balance in our family of five which includes a dad who works long, long hours, me, two teenagers in high school, and one preteen with ADHD in middle school. I hope for basics like cooking more nutritious meals (or cooking at all), being a mother who can breath, more support for completing homework, a presence when a random teen decides to open up, flossing my teeth, some yoga, as well as developing my writing. If you are snickering at my unrealistic expectations, I understand.

Last Fall I wrote for this blog about my ambivalence about working and mothering three intense kids, one who I comfortably think of as high need. At that time, I decided to stick it out with my job as a psychologist who, for the past decade plus, has worked with kids and teens at a local medical center. Even after my decision to stay at work, however, I continued to be preoccupied and torn in two different, demanding directions. Then one day in June, with my husband’s full and loving support, I sat at my desk at work and thought if I don’t just do it, I will remain stuck and nothing will ever change. I decided not to stay in my job based on fear, but to make a change despite the fear. So, right then and there, I wrote a letter of resignation and sent it off to my manager. When we met later that day, I told my manager that I could stay until September in order to facilitate a smooth transition for my patients and the department.

The relief of this decision lasted about one day. Maybe two. This was then replaced by a constant state of feeling terrified. Continue reading