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

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?

Nov 26

Sometimes My Child Needs A Different Mother

I’m frustrated and sad because I don’t know how to help you with this. I don’t like to see you in pain, but I don’t know what to do.”

Have you ever wondered if your child would do better in life if they had a different mother? Perhaps we all have. I have often had the thought that I am too soft to be good enough as a mother, that I have too much empathy that has gotten in the way of me giving my three children what they need. But having this thought as it applies to my oldest two children has been occasional and minor, where as this thought has, at times, been overwhelming when it comes to mothering my youngest daughter, Sarah.

Sarah is now in the seventh grade, her second year of middle school, the hardest year of middle school for most girls, and almost every school day over the past three months has been a challenge. My girl has had major mood issues her whole life, anxiety that manifests as angry outbursts, and ADHD. She has had many interventions over the years, but the most effective, it seems, has been riding horses. With horses she is able to relax, to be accepted, to learn about communication, among many other things. But medication has also been necessary and something she fights every day. Continue reading

Aug 10

To Med or Not To Med?

Recently, I witnesed a debate about medicating kids with invisible disabilities. Predictably, sadly, it got a little heated on both sides. Now, I have strong opinions on this as it relates to my own kids but let me state upfront that I do not feel that my opinions should be held by anyone but me. I’ve lived through moments where it took every ounce of self control, every molecule of patience, just to get to the next moment in time without losing my mind. I’ve had days where I’ve wished with all my heart for a pill that would make it all go away. I’ve also had days where I’m grateful that no such pill existed because walking a different path brought unexpected gifts.

Sometimes the decision to use a medication – for any illness – is a slam dunk. Other times, it comes only after an agonizing internal conflict. Sometimes it doesn’t come at all and you choose to slug through med-free. I think the reason many parents decide to give a child a pill – by prescription or an over the counter supplement – is because that particular medication just might give the body and brain something that’s missing. It’s a decision driven by the desire to give your child – and your entire family – a better quality of life; to provide freedom from hell on earth. It is not “taking the easy way out,” using “mother’s little helper” to shirk the hard work of parenting. It is choosing, each in our own way, to be a responsible, nurturing parent who’s trying everything possible to do the right thing. But there is no “right” thing in a way that’s “right” for everyone. Or even “right” forever. There is only “right” for right now.

Continue reading

Jul 24

A Glimpse of Normal

When you raise a child with “challenges,” you can spend a lot of time measuring your life against a “normal” ruler – some imagined gauge to see just how abnormal your life is compared to other families. Some days, you look around and decide you’re not doing so bad. Other days, you feel like your family life is so off-the-charts insane that you may never find your way back.

Having kids with PANS (pediatric acute-onset neuropsychiatric syndrome) means our normal-o-meter goes up and down based on health. When illness blows through the house, Normal becomes a place on the other side of the globe.

It’s a rare event to have both kids healthy at the same time.  But bucking tradition, both started this summer in a good place. After years of medical battles, I felt like I was finally getting a date with Normal. This is the story of how the date went.

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Jan 19

Accepting Holland While Still (Desperately) Aiming for Italy

view from planeEarly on in my battles against childhood diseases, I came across the poem by Emily Perl Kingsley entitled “ Welcome To Holland.”

It’s a classic poem that does an excellent job of describing the heartbreak as well as the gifts that come with raising a child with autism. Some parents love the poem – especially parents who, like me, have kids not with autism but with an illness that is treatable/curable. I loved it because the heartache rang so true but the despair of shattered dreams did not. “I’m not doomed to accepting my son’s illness,” I always told myself, “but this poem explains my sorrow.” Then I’d console myself with the conviction that I was a warrior mom who was going to slay the bacteria that was keeping my son sick and then restore his perfect childhood. I did enjoy the part of the poem that spoke about cherishing the gifts of today and enjoying the unexpected lessons that an illness can bring. But I read that part about acceptance with a shield of denial – my son’s issues were only temporary. I didn’t really have to learn to love Holland. We were still headed to Italy. Holland was just an unplanned layover.

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Oct 12

Meet Eve, Part 5: Blame & Shame

Welcome to part 5 of this series of posts about Eve, short for Everyparent of an “Easy to Love but Hard to Raise” Child. Eve is an archetype who represents the experience of raising a child with ADHD or other invisible disabilities. She’s revealed in the upcoming book, Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories, which is now available for pre-order direct from the publisher, DRT Press, at 30% off cover price, as well as from amazon.com. In parts 1 through 4 of this series we explored the following quotes from Eve, all of which reflect the pre-diagnosis stage of the special needs parenting experience, from when our children are infants, through the preschool years. Eve says:

“The experience of parenting this child is nothing like I thought it would be.”

“I can’t enjoy playgroup, story time at the library, or other chances to spend time with other parents and kids, because my child’s behavior is too hard to manage.”

“I expected standard discipline tactics to work, but they just don’t. I seek out new parenting strategies, but they don’t work either.”

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Oct 07

Stages of Dress

Rachel Penn Hannah

Youngest daughter comes home from her first ever slumber party. She is ten years old, has ADHD, and has never been invited over to a girl’s house to play (not counting cousin). Girls have been invited over to her house to play to test the waters, but no invites to reciprocate.

Daughter is over the top excited when mother and father pick her up. Daughter had been preparing for days, carefully picking out birthday presents her friend would like: a large box of popcorn, a book about horses, neon green nail polish, and a small make up kit. Then daughter wrapped them individually, putting boxes inside boxes, each with a riddle folded on top.

Daughter says she did not fall asleep until 3 am, then woke up at 6 am with the rest of the girls. “It went well,” mother and father were told when they picked daughter up at the front door. Suddenly their spirits were light as air in contrast to the heaviness and dread they had struggled with through the night.
Daughter talks non-stop during the car ride home. She talks about the many things they did together, but mostly about “talking almost all night.” Mother could see daughter’s face in the rearview mirror and saw a wide-eyed thrill when daughter said, “And we gossiped.” “Oh it’s not good to talk badly about people,” mother felt compelled to say. Daughter looked confused, quickly saying, “we gossiped, Mom, you know, we talked about people but we didn’t say anything bad about them.” “Oh”, mother and father say in unison.

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Sep 29

Are we mothers, or martyrs? When and why do we medicate our ETL kids?

 

Patricia Quinn, M.D. served as an expert for the book Easy to Love but Hard to Raise

A recent survey of 1003 parents of kids with ADHD, co-sponsored by NovenPharmaceuticals, the makers of the Daytrana patch, and ADDitude magazine, found these, among other, results:

  • Nearly all children who take medication do so during the school day. Sixty-one percent of parents whose children take medication allow it to lapse beyond the school day.
  • More than one-third of parents find weekday activities and events—including after-school activities—difficult to manage, and 27 percent have difficulty managing family or social events on weekends.
  • Homework time was the most difficult time for parents to manage their child’s ADD/ADHD symptoms when the child was not taking medication.
  • This leads me to ask: Why is this? Do we medicate our children only when absolutely necessary—for school—but cope with our kids’ difficult behaviors at home, because we believe (consciously or subconsciously) that we would be medicating them for our own benefit, and therefore we are reluctance to do so? If not, then how do you explain those results?

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    Sep 08

    Balancing Work and Parenting High Need Kids

    Rachel Penn Hannah

    To work or not to work? Unfortunately, that is not the question. I have to work. Having two kids in a tiny, alternative high school that can better address their learning issues is expensive. Plus I have a younger child in middle school who might need private school in the future. I have been fortunate to be able to work half time, 12 hours one day and 8 hours the next work day. My husband and I both have professional careers, but his more than full-time hard work allows me to work less so that I can be home with the kids on most days. It sounds like a luxury (and compared to many situations it is), but with three kids with learning issues plus adolescent issues and one of these wonderful children with a mood disorder diagnosis even this work situation can seem to be too much.

    I have recently taken a family medical leave to care for my son. He is 16 and is struggling with some substance abuse issues. When my son was in sixth grade the psychiatrist tried to find an ADD medication that my son could tolerate, but was unsuccessful. She then predicted that drug and alcohol use could be an issue in the future. The neurologist that treated my boy after a traumatic brain injury when he was 14 warned that his brain would now be more vulnerable and that drug seeking behaviors often follow neurological trauma. And the reality of these risks came to bear on the first day of summer, June 10, this year. My son took ecstasy, called us to come get him because he was having a bad reaction, and had to be rushed to the emergency room for treatment. Thankfully, after several hours with IV fluids and other attempts at medical stabilization he was okay.

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