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

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

Feb 26

Guest post: Losing a Hero

old_mans_handsGrief is a great, big monster that jumps out from under the bed and scares the living crap out of you. You don’t see it hiding under there, even if his large, hairy, zombie toe was sticking out just a little. Even if a ghoul straight out of the Thriller movie was in your closet when you opened it up before bed. You ignored it. You’re just not ready, and I am talking about how we adults process and handle grief.

Imagine someone taking your 8 year-old, ADHD world by a string and giving a violent shake and bouncing down the stairs. That’s what happened to our son when my father, his beloved Papa, was diagnosed with stage four glyoblastoma brain cancer and died (what seemed like seconds) 5 weeks later, in November 2011. 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

Jan 09

Reader post: Let it Go!

Nana is mom to an 11 yr-old drama tween daughter, a highly gifted, highly adHd/SPD 8 yr-old son, and a stubborn 5 yr-old son who plays the clown. Wife. Employee. Volunteer. Friend. Artist. Craftswoman. Occasional Quirky Crazy Person. She blogs about all sorts of things at nanahgregg.wordpress.com.

letitgo copyI am terrible at New Year’s Resolutions. I’ve never really sat down and made an actual resolution – have always been a bit cynical.

Over the past few months, I think I’ve grown a bit, or matured or something, but I’ve been a bit more reflective.

Having been blessed with a twice-exceptional ETL and 2 other equally challenging kiddos, I am constantly looking on the internet and talking to friends about parenting issues. It’s such a learn-as-you-go occupation, being a parent. It’s so easy to get caught up in what I’m doing wrong, what my perception of ‘good parenting’ means, and what others think that I think I’m missing out on opportunities to be a great parent

So this year I am making a resolution. I’m writing it down, right here for everyone to see and so I can remind myself regularly.

Are you ready for it?

“Let it go.” Continue reading

Dec 19

You Matter

MC900434914-1If you’re reading this, chances are you are mourning the lives lost in Newtown, Connecticut.  As the nation begins to emerge from shock and horror, as we pass into a phase of soul searching and debate over gun control and mental health care, dozens of teachers from Sandy Hook Elementary School will start the new year by walking into a school in the neighboring town of Monroe and do something unfathomably courageous. They will greet the hundreds of children who must return to school for the first time since the shooting. They will give reassuring hugs, they will keep a keen eye out for both physical and emotional well-being, they will dedicate every ounce of their being toward making the world right again for those in their care. They will fight the tears that threaten to gush forth, they will suppress their own sorrow and fears so that their children might eventually learn to feel safe again.

I cannot imagine the courage these teachers will have to muster. But I can imagine the love and commitment that drives them. It is the same love and commitment all caregivers have for those who need us.

There have been numerous calls to action to honor those whose lives have been forever altered by this nightmare, most notably Ann Curry’s call for everyone to perform Acts of Kindness for those around us as a way to pay tribute to those who’ve been lost to us. One act I’m going to do is to write thank you notes  and deliver them to the Newtown Superintendent, asking her to deliver them to the school staff. Here’s what I want to say:

Thank you for your courage. Thank you for the love you give every day. Thank you for giving the gift of yourself no matter how hard it is sometimes. The people in your world are richer because you are here. You make a difference. You matter.

I read this to myself over and over, wanting it to be concise yet wanting it to speak volumes. Then something occurred to me. This is the same note I want to send to a few of my friends who struggle with depression. With the dark and cold months ahead, I worry that they’ll forget how important they are to their kids, to their grandkids, to me. This is the same note I want to give to my husband to make up for all the times I get too busy to make the time to show him how much I love him. This is the note I want to give myself because I’m trying to be a good friend to me. This is the note I want to give to my son and to my daughter. No matter how often I tell them, they can’t truly comprehend how rich they have made my life, how much they inspire and teach me, how deeply I love them. I want to indelibly write this into their brains so they never, ever doubt just how much they matter. This is the note I want to send to every child who feels disconnected, who feels that no matter how hard he or she tries, (s)he is just too different to ever fit in, to ever be understood.

You matter.

I care.

And so I send you a note today, as a caregiver of children who really, really need you:

Thank you for your courage. Thank you for the love you give every day. Thank you for giving the gift of yourself no matter how hard it is sometimes. The people in your world are richer because you are here. You make a difference. You matter.

 

Nov 30

On Being Judged

Throughout the year, there are obligatory events that make parents of an “easy to love but hard to raise” child cringe – birthday parties, vacations, trips to see relatives, the start of the school year and the double-whammy of Thanksgiving and the gift-frenzies of December. These are the events we dread because they come with a generous helping of judgment. Every year, you see magazine articles and blogs helpfully entitled “How to Start the School Year Off Right” or “How to Survive the Holidays with Family.”  You roll your eyes, knowing there’s no hope for you and your offspring. But you read them anyway. Maybe you’ll glean a smidgeon of insight or at least be reminded that you’re not alone in your dread of gatherings.

The general theme of these essays is that 1. Your child is bound to draw unwelcomed judgment upon him/herself and (guilt by association) you and 2. You can do damage control. I now totally disagree – at least on Point #2.

Recently, my extended family gathered to mark an event (pick any event – they all have the same story). Inevitably, someone made a casual comment about a relative who wasn’t there. That was followed up with a story about the last family event this relative attended where words/actions bypassed someone’s brain filter and led to hurt feelings. Before long, the whole extended family was on Freud’s couch, being analyzed, poked, prodded – and judged. Not all judgments were harsh. There were some nods to noble qualities and thanks for support given in a needy moment. But unkind sentiments weren’t exactly on the endangered list. My overall reaction was to clam up, to move away from a conversation that could become toxic. I’d like to imply this was because I’m above all that, that I don’t have a catty bone in my body. But you’d probably know better.

Continue reading