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

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

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

Aug 05

What I did on my summer vacation, or Car Trip! Yay?

car tripIf you clicked on this expecting a list of suggestions for how to have a happy car trip with your behaviorally challenged child then I hate to break it to you: you’re not finding it here. My husband and I are in the midst of a 2-week car trip with our two boys, 11 and 14, and while there have been some true high points to the trip (Maid of the Mist at Niagara Falls thrilled me- yes, I am a true tourist in my own country) there have also been some super low, low points. Like having nasty wet paper towels thrown in my face at a restaurant. Like hours-long swearing fits in the car. Like constant bickering. Like my younger child’s complete and utter refusal to do anything other than what he wants to do with absolutely NO compromise.

Continue reading

Jun 26

Flipping Burgers in First Grade

A tiny burger sizzles over the pilot light of the stove.  I’m a chef frying up a mini burger for my baby doll, Sheila.  A cake is baking for dessert in the Easy Bake Oven.  Our family dog, Nicky, stands by hoping he’ll get to dine with Sheila.  Nicky looks up at me expectantly licking his chops; I agree this burger is taking too long.  As I turn the knob on the stove, the blue flame bursts out under the pan, and the burger cooks faster spitting oil at me.  A few moments later, I hear big footsteps coming toward the kitchen; I quickly turn the gas off.  My dad enters the kitchen.

“You turn the gas on?” My dad peers over my shoulder at my mini burger.

“No,” I lie.

“I smell it.  Keep the gas off.”  Big footsteps walk away back into the living room.

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!

Apr 28

Let’s Celebrate! 5000 people can’t be wrong: we are truly NOT alone.

partyToday I taught a class on d.i.y. publishing. While you all probably know that I edited and contributed to Easy to Love but Hard to Raise, you may not know that I published the book through my small publishing company, DRT Press, which I started in 2003. I now have 5 books under my belt (3 successful, one so-so, and one a terrible flop), 2 more to come out this year, and 3 more in the works. So yes, people sometimes come to the workshops I have on how they can publish books of their own.

Anyway, at the workshop I was talking about how many, many hours I’ve put into marketing Easy to Love but Hard to Raise and one of the participants asked me how much money I estimate I’ve made per hour when all was said and done and I QUICKLY said I don’t want to do the math because it would be pennies…but two minutes later I was showing them this blog and the Facebook page and I saw the number 4999 and I REMEMBERED: It’s not the money. It’s the community. Because while yes, of course we created a book to make money, the added, spectacular bonus that has come from the book and the blog is knowing that ALL OF YOU are out there! Every single day someone writes and says ‘thank you for what you do.’ EVERY DAY.

So, in honor of that 4999 turning to 5000 connections, I want to give something back. And what I have to give are books! Yay, books! I will mail out 5! So enter. You’ll probably win!

Here’s how it will work. YOU will comment on this blog post and tell us one great thing that being part of our community has done for you. Include your email address – it’s ok to say adrienne (at) whatever.com if you are worried about spammers but you have to put an email address or I have no way to contact you. To win you also have to be part of our Facebook community – so if you’re coming at this give-away another way, be sure to hop on over there and LIKE us.

And that’s it! I’ll give a book away every day this week, starting tomorrow the 29th.

Love you! ~Adrienne

Yay!

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 22

Guest post: A Letter to the Future Teacher of My Exceptional Child

 

always_believe

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