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

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 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 19

Eyes Open

So your ETL, forgets his homework – more than a few times.  Should you help him organize his locker?  Email  teachers and ask for assignments to be sent to you?  Check agenda for fourth time?

Or, there’s  problems with  friends.  Should you check Face Book to see what’s going on?  Should you call parents?

Even worse, your ETL is an adolescent and finds himself in trouble with the law.  Should you help him get a lawyer?  Should you help navigate the consequences or help with fines? 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

 

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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 20

Guest post: Been there, done that, where’s the t-shirt?

adhdt-shirt

I fly at least once a month for my job and each time I arrive at the airport, I am met with the announcement of what color Homeland Security has assigned to our potential travel threats. The color red equals a severe threat of attack, while blue offers a “guarded” risk.

Everywhere we drive, colors represent something similar, as well. From the first time we start to drive, we recognize that the color red, whether on a stop sign or light, dictates that we should stop, while yellow guides us to slow down or proceed with caution.

At least once a month, I see someone post something on Facebook about being “dumb enough to wear a red shirt in Target” and after seeing some version of that sentiment for about the tenth time, I started thinking.

What if I was able to wear a brightly colored shirt that enabled me to alert those around me that I was in the company of a small child with ADHD? What if I had the luxury of presenting myself with a universally-recognized color garment that told people to “proceed with caution” both in how they regarded my child and how they addressed me? Continue reading

Feb 19

Guest post: The Shoes that Matter

A life long resident of upstate New York, Kristin Osborn lives at the foot of the Adirondack mountains with her husband and two kids, 11 and 4. Kristin is a graduate of the State University of New York’s creative writing program and has been working as a manager in medical sales for 10+ years. Being a mother to a son with ADHD has finally given her the outlet to start writing again, as being able to put her feelings into stories is a therapy that’s hard to match.

red_shoes_muohace_dcI have been following the site for a few months now and it has really helped me to deal with my feelings about being a mom to a four-year-old with ADHD. I know so many people ask questions on here, but for me, it’s helped me to just write down my thoughts about my experiences. It’s even helped me to consider starting a blog, just so I can have an outlet. I bet some people can agree! Here’s something that happened just last week:

Last week a Dora the Explorer fruit snack took an 800-mile trip with me. Through a thirty-minute wait at security and through two flights, that chewy little purple smush hung on tight. I travel a lot for business and so because I have a small child with ADHD, I relish those overnight trips by myself. I get to wear clothes that are clean and that also match and I get to eat in restaurants where the food doesn’t come served exclusively on a red tray. Continue reading