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?

Aug 16

Should brothers and sisters take care of their SN sibling? Where’s the balance?

balanceA couple of weeks ago I was at an event for moms of kids with special needs. I was the facilitator of a group conversation about balancing the needs of the rest of the family with that of our neuro-behaviorally challenged kiddos.

Facilitator does not mean expert or even master of the situation, by the way. I hope I balance things out, but most of the time I feel like I’m failing miserably. No matter what my husband and I do, everything revolves around my younger son and his needs. It kind of has to. He has FASD, and because it’s brain damage caused by alcohol exposure in utero, the best interventions for him are to manage his environment so he can navigate it successfully. He can’t change, so we need to. And us changing = imbalance, sometimes. Fair doesn’t mean we all get the same thing, fair means we all get what we need. And in our house some days it seems like we’re very far from fair. One small person’s needs rule our household most days, although we have developed some work-arounds that help out a little. 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

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

Nov 21

Holiday fun! Relatives who don’t get your ETL child…

I posted this almost a year ago today and it’s still pretty relevant. Thanksgiving and the holidays are really stressful for kids like ours, and unforgiving family doesn’t help matters at all. I’m hoping this year’s holiday will be okay, but I have a contingency plan if anything goes wrong – pay attention to my child and leave as soon as things go awry.
Let’s get one thing straight from the get-go: I have a really great family. My parents, my in-laws, my sisters, their husbands and my nieces – all have been really understanding and forgiving when it comes to dealing with Little J.
Yes, there have been moments, like when my (very tired) mother-in-law was seated next to LittleJ for a 4-hour car ride and he talked non-stop from the maple syrup capital in northern Vermont all the way to their home in western Massachusetts , forcing her to eventually put her hands over her ears to try to drown him out, or the time he called my mom a Big Butt and my step-dad picked him up and turned him upside down to “teach” him not to do that, or the very first time he met his same-age, heretofore peaceful female cousin and within 5 minutes had goaded her into punching him in the head…oh, the list is really endless. But all in all, our immediate family has been very understanding and kind and generous in helping with Little J. Many times much more than I’ve managed to do so, frankly. And I really appreciate it. 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

Nov 12

Homeschooling & neuro-behavioral special needs: what type of homeschooling works best?

If you’re reading this you’re either curious about homeschooling because you think it will help your child, actively homeschooling and looking for tips, or searching in desperation because you’re sick and tired of whatever rigmarole you are going through with your child’s school.

I have been in all 3 situations. And like I said in my last post about homeschooling a child with ADHD or other special needs, including neuro-behavioral disorders, cognitive delays, developmental delays, social skills problems, learning disabilities, or just plain old out-of-the-box thinking, I am pretty new to the whole homeschool thing. I’ve been homeschooling my 10-year old son exactly 1 year and 3 months with a 6 month sabbatical (we sent him to a private special needs school) thrown in the middle. I don’t have all the answers, but I do know that pulling our son, diagnosed with fetal alcohol spectrum disorder (FASD), which includes elements ADHD, ODD, SPD, PDD, cognitive delay, and PBD out of school was one of the best treatment decisions we’ve made for him so far. Continue reading

Nov 12

Homeschooling your child with neuro-behavioral special needs: myths and realities

Compared to many people, I haven’t been homeschooling very long. J, my 10-year old with ADHD, learning disabilities, audio processing difficulties, developmental delays, poor short term memory, and sensory processing issues, all under the umbrella of fetal alcohol spectrum disorder, or FASD, is only just starting his 2nd full year of homeschooling along with his brother, 13, who is neurotypical and a typical early teenager. But deciding to homeschool was no easy task, and I’ve read a lot and thought a lot about why this is the best choice for our family. Continue reading