Oct 30

Guest blog: Life in Shadowland (or, Things I Wish People Understood about Having a Child with a Neurodevelopmental Disorder)

This is a repost of a guest post by Kelly Schmidt, written back in July. I’m reposting it because it seemed to resonate with a lot of people. Kelly is mom to Nathaniel, and Ph.D. candidate in a developmental psychology program. For Kelly’s full bio, see the  bottom of her post.

 When Kevin and I were married 10 years ago, we understood that there were no assurances that we would have a child because I have an endocrine disorder that causes fertility problems.  Nobody was more surprised or excited than us when we learned 2 months after our wedding that we were expecting.  I chose the name “Nathaniel” very deliberately because it means “Gift from God”.

Nathaniel has a BIG personality.  His smile is high wattage, his giggle is contagious.  He is scary-smart and has an amazing memory.  Sometimes he is so thoughtful and concerned about others, he takes my breath away.  He has a very strong faith and knows more about the Bible than many adults.  He loves sports (especially basketball), Legos, video games (much to my dismay), and reading (which makes me proud), and his brother Joel.  He likes to draw cartoons, help make pancakes and cookies, and talks about Pokemon and Mario Bros. endlessly.  He is 110% boy.

Nathaniel also has behavioral and psychiatric disorders.  The behavior disorder is called Attention-Deficit Hyperactivity Disorder, also known as ADHD.  The psychiatrist calls his psychiatric disorder a “Neurodevelopmental Disorder” but since insurance companies don’t reimburse for treatment of that, she calls it “Mood Disorder Not Otherwise Specified (NOS)” for billing purposes.  He has some features of bipolar disorder, oppositional defiant disorder, anxiety disorder, and even Aspergers syndrome.  He doesn’t meet clinical criteria for any of those disorders, however, because he is typically not symptomatic anywhere else but at home.

Home is where the explosions occur.  Home is where there is defiance, anger, and violence.  Home is where frustration boils over to punches, requests lead to rebellion, and yelling and tears are almost daily occurrences for all members of the family.  Peace is fleeting.  Quiet, dreadful anticipation of the next meltdown or outburst is the norm. Continue reading

Oct 22

Guest post: The ODD Mom gives us 8 Tips for Surviving your Child’s ADHD without Losing your Mind or your Sense of Humour

This week is ADHD Awareness Week, which seems an appropriate time to share my thoughts on surviving your child’s ADHD. Granted, Bear is only 7 and we have a long way to go, but I think these tips can help no matter where you are in the journey. (For the record, I started this post days ago, but my own ADHD kind of got in the way and I ended up doing 23 other things instead.)

If you have a child with ADHD, then you know that there are days where you would not only happily sell your child to the highest bidder but might even be enticed to giving them away for free.

When Bear was first diagnosed, it was a relief. This wasn’t our fault. We weren’t bad parents. We weren’t to blame. There was something bigger than us at work here, and now we had to figure out what to do about it.

My instinct has always been to approach things with a sense of humour. If I can’t make it go away, I may as well have a little fun with it. It’s how I cope. Now that’s not to say I don’t allow myself to wallow every now and then or that I don’t take things seriously. I do, but my slightly warped sense of humour allows me to find the funny in some of the stuff we deal with. Thank God, cause we’ve dealt with a lot and while things are going really well right now, I know we have a lot of new challenges ahead of us.

So, how do you survive in the face of your child’s ADHD?

To read the rest, go to The ODD Mom blog itself!

Oct 03

Guest Post: Mom’s Income / The Real Cost of Childhood Special Needs

Laura Weeds Wright’s blog is The ODD Mom. Here’s what she says about herself: “I deal with more parenting challenges in a week than most parents probably deal with in a year. I’m an ODD mother — the mother of a child with Oppositional Defiant Disorder. I’d love to say this doesn’t define me, but something that consumes your every waking hour can’t help but define you. So rather than hanging my head in shame, I’ve decided to wear the label like a badge of honour. Come with me…it’s an ODD life I live.” This blog post was first posted on her blog in April, 2012.

As I sit here in the middle of the afternoon, chaos reigns around me. On the table beside me sits a stack of bills that I’m trying to juggle payment on — I have to decide which ones need to be paid now and which ones can wait until next payday. In the living room Stitch is playing, happily throwing blocks around and laughing madly as they bounce off the furniture. Down the hall Bear, who should actually be at school right now, is playing his Leapster, the fact that it’s an “educational” game allowing me to fool myself into believing it can be classed as “work.”

Continue reading

Sep 24

Humor? Really? You Have to Be Kidding

I have always prided myself on having a good sense of humor. I can make other people laugh. I can stand in front of an audience of 200 and create laughter that warms my heart. I can poke fun at myself and sharpen my wit at my own expense. So why is it so hard to always be upbeat when you’re dealing with an ETL child?

There are so many emotions that you encounter during the day when you are dealing with kids that are not cookie-cutter easy bake kids. Embarrassment comes to mind. Public places, friends with children who “do” all the right things, sitting in church. Guilt, another favorite emotion. What did I do wrong? How come it looks so easy for everyone else? Should I try medication? Was it that glass of wine I had during my pregnancy? Who does he take after?

Continue reading

Sep 18

Wah wah. Poor me. Welcome to my pity party.

Last week I wrote the topic for today’s blog: “Homeschooling the special needs child by building strengths.”

HA HA HA.

Since I spent a good half hour this morning yelling at both my children (1 with FASD and one completely neurotypical), largely about their homeschooling issues, I don’t feel very qualified to talk about homeschooling right now. And my throat hurts from screaming. And I’m embarrassed. It wasn’t pretty. Today isn’t the first day when it’s occurred to me that homeschooling + perimenopause (wah! It’s hit with a vengeance) + working 30 hours/week + just life in general with a child with FASD (fetal alcohol spectrum disorder) is a recipe for disaster. Or at the very least, insanely high stress. Continue reading

Sep 12

Why we quit school…again: homeschooling my special needs child (how we got here in the first place)

My son, Little J, is 10 years old. If he was in school technically he’d be in the 4th grade. I say “technically” because he’s nowhere near that level, educationally. If I had to guess – and at this point it’s a guess since all our current testing data says what he CAN’T do, versus what he CAN – I’d say he’s around beginning 2nd  grade level for literacy, and beginning 1st grade for math.

J has FASD, or Fetal Alcohol Spectrum Disorder. FASD is largely characterized by behavior. Because of J’s processing speed,  poor working memory, developmental delays, and cognitive difficulties he can appear oppositional, immature, and forgetful. He has a number of strategies he’s developed to buy himself time and not reveal that he’s having trouble. These include calling names, saying “no!” destroying his work, becoming frustrated, and downright refusing. These things “read” as J purposefully being difficult, but really, they’re just him managing his frustration. Most of the time if you can wait a beat and not react to these behaviors he’ll comply with what you’ve asked. But you have to wait a beat.

He is a hard kid to have in class. Continue reading

Sep 12

Part 2: Homeschool, the Special Needs School, now back to Homeschool.

Here’s part 1: Why we quit school…again: homeschooling my special needs child (how we got here in the first place)

image by flickr user sheeronSo we homeschooled. It was rough. The learning curve – MY learning curve – was steep. I was spending 24/7 with a child who had major behavioral difficulties and who really needed to be watched like a hawk with almost no respite and a heart full of worry and fear and anger and exhaustion…and even though I tried really hard (read about that here), I burnt out. We both burnt out. You can read all about that here.

The great homeschool experiment was last year: 2011. In January of this year, after being rejected from the special needs private school closest to our house, we enrolled J in a different special needs private school. An hour from our house.  And I mentioned private, right? Which means TUITION. Continue reading

Sep 05

Repost: You are not alone!

This is a repost from the spring. Since then, much has changed in my life, but this feeling – that I am not alone, never alone in my feeling about being the mother to a child with sometimes baffling behavioral special needs – is still ever present. Since April, when I first wrote this, our blog readership has almost doubled, our Facebook community has literally doubled, and more and more people every day are finding us. As the person who runs this blog and Facebook page I’m faced with the need to accommodate our Easy to Love family by creating a forum – one where folks can post anonymously, if needed, but also a place where we can grow as a community.

In any case, I thought this was a good post to re-share at this time of community growth. This was the first time I talked to a group of parents about my experiences raising a child who is easy to love but hard to raise, and it was a powerful experience for me.

Thursday night I had the privilege of speaking to a group of parents at the Chesapeake Bay Academy, a special needs/learning challenges school in Virginia Beach. I was invited there to talk about our book. I thought long and hard about what I should say to these parents. I didn’t want it to be a book infomercial. I also didn’t want to read a lot, since listening to someone read is kind of boring. But I wanted to convey the main message of the book: as the parent of a child with an “invisible” special need, you are not alone. Continue reading

Aug 14

If Mama Ain’t Happy, well…

This is the speech I gave to welcome everyone to the Happy Mama Conference and Retreat, held a couple of weeks ago in Conover, NC. We had an amazing time and we will definitely be doing it again. I’m sharing the welcome speech on the blog because I think it will resonate with all our readers. Remember, you are not alone.

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. Continue reading

Aug 14

If Mama Ain’t Happy, part 2.

Here’s part 1 of this post. I was just about to explain a metaphor for parenting a child with invisible special needs.

This chair is in my bedroom. Do any of you have a chair in your bedroom? What happens to chairs in your bedroom? This….

Maybe not quite as bad as mine, but whatever. It’s been a busy last couple of weeks.

Here’s the deal with the chair: when I do laundry I bring it into my bedroom to sort and put in piles on my bed. Each kid has a pile, my husband has a pile, towels go in a pile, etc. Once laundry is finished for the day I call my kids in to put their clothes away, and they usually do. Sometimes my son Jamie puts up a big stink (he’s my ETL baby) but since this is the ONE CHORE he has eventually he’ll do it. My husband puts his clothes away, too. So that leaves my clothes, the towels, the sheets, cloth napkins, dishtowels, etc.

So I make sure everyone’s laundry is put away…and then I don’t put away my own. Continue reading