Feb 24

25 Things Parents of Children with Special Needs Want Their Kids’ Teachers to Know.

school_etlA year or so ago I gave a presentation for people who are training to become special education teachers and to prepare, I asked the parents on the Easy to Love Facebook page what advice they’d give these future teachers. The advice they gave was spot-on – not just for people training to work with   kids specifically designated “exceptional,” but for ALL teachers, since most of our kids are mainstreamed.

Here’s the advice. It’s wonderful. Pass it around. Link to it. Print it out. Share.
  1. Children with “invisible” special needs, like ADHD, PDD, SPD, PBD, FASD, OCD, Anxiety,  ODD, Autism, Asperger’s, and many others manifest their disabilities behaviorally. It is EASY to blame the parents for these behavioral problems. It is ACCURATE to see these behaviors as a result of their brain dysfunction.
  2. Communicate, communicate, communicate. Communicate! We can’t help if we don’t know what’s going on.
  3. On the flip side, if we over-communicate, cut us some slack. We are not helicopter moms, we are experts in our own children’s special needs. They, and we, are often misinterpreted and we’ve found that the squeaky wheel gets the grease. Let us squeak! It’s not nosiness. It’s not pestering. Really, most days, we would much rather say “It’s your school, you handle it, don’t call me”– but we want our kids to be successful. Which means being their best advocates. Which means we call or email as much as is necessary. Continue reading
Apr 30

Repost: Detachment Parenting, or Confessions of a ROBOT mama.

I first wrote this post 3 years ago. My son had been newly diagnosed with fetal alcohol spectrum disorder (FASD) and I knew enough about him and enough about FASD to know that his behaviors weren’t completely under his control, and that the best thing I could do was not to respond. Since I wrote this I’ve learned a great deal more about FASD, and am an FASD educator. I’m happy to say that by using the 2 strategies I explain in this post, as well as providing accommodations and environmental change for my son, much of these behaviors have diminished. He’s also 3 years older, and as John Holt said (a rough paraphrase) in one of his wonderful books about homeschooling: ‘Never let anyone else take credit for a child’s development that occurs simply because the child is getting older in the world.’

lady_robotI have something to admit: sometimes the very best tool I have a parent is my ability to detach. Or at least pretend to detach, which is just as good when it comes to managing my easy-to-love-but-hard-to-raise child, but which isn’t particularly healthy for me: stuffing and stifling one’s feelings is not generally thought of the most emotionally healthy activity, you know.

What I mean by detaching is this: if my child screams, swears, or throws stuff at me, tantrums on the floor, demands x,y, or z,, perseverates, says “what do you mean?” over and over and over again in response to simple statements, runs from me when I’m speaking, interrupts while I’m having a conversation with someone else, talks nonsense when my husband and older son and I are conversing at dinner, destroys his toys, destroys other people’s toys, takes things that don’t belong to him…I do my utmost to remain calm. All of these behaviors are related to the brain damage he experienced as the result of fetal alcohol spectrum disorder. None of them are on purpose. All of them are a response to his needs not being met…and all of them are profoundly difficult to deal with.

I have two basic strategies for managing these types of outbursts: 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 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

Oct 31

5 reasons why this special needs mom HATES Halloween (and it has nothing to do with Satan)

After 9 Halloweens with my wonderful son we haven’t had a good one yet – oh, except the one when we were traveling and we skipped trick-or-treating in favor of ice cream sundaes. I can honestly say that while it has gotten better over the years, as the mom to a child with ADHD, Sensory Processing Disorder, mood disorder, and slow auditory processing, all under the umbrella of fetal alcohol spectrum disorder (FASD), I hate Halloween.

Here’s why:

1. The candy. The Candy! My child cannot handle dyes, too much sugar, or artificial flavors and so some Halloweens I’ve had to go through every single donation before we’ve even made it to the sidewalk. Airheads. Nope. Skittles. The worst! Laffy Taffy, Mike and Ikes, even M+M’s – like poison. And then once we get home figuring out where to hide it and the right ratio of miniature candy bars per bites of dinner…really, spare me the hassle. One year he feigned tiredness and stayed on the hayride for an entire neighborhood block while I took his brother house to house. When I got back to the wagon he had 8 Laffy Taffys shoved in his mouth. He couldn’t even chew. His face was covered with Laffy Taffy slobber. Honestly, it’s better when his dad eats it all.

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

Nov 15

So many families, so many stories

heart+leaf by flickr user bradleygee

At the CHADD (Children and Adults with ADHD)  conference this weekend Kay  and I had a table for the book and we spent hours and hours talking to parents of kids with ADHD. Our display focused on the emotions of parenting kids with invisible disabilities – the threads that wove throughout the essays in the books – and the statements prompted many stories, exclamations of recognition, and emotional tales from almost every parent we met.

Here are some of the people I met:

The blond woman with a cute dimple who was happy with her son’s school but scared at some of the stories she’d heard from others – we told her that some people (like me) have terrible experiences with their children’s schools, and some (like Kay) have experienced success. One school year at a time. Get an advocate if needed. She found me the next day as I was hiding from the crowds, overwhelmed by the emotions of the people I’d met, and gave me a well-needed hug.

The husband and wife whose kindergartner left school one morning and went home because he wanted to show his friends a toy, then stayed because he knew that being late to school was bad. Mom, dad, and teacher were scared to death. The principal suspended him.

The woman  who told me that her chronic stress had led to a myriad of health problems, but steady healing work with a therapist was allowing her to drop medications she’d taken for years. She also said her daughters, both with ADD, had both wrecked their cars. “That’s the phone call I dread getting: that my kids have been in a wreck. Or got a ticket. Or both.”

The joyful mother from Massachusetts who shared her son’s satisfaction with his vocational school. Sometimes it’s not that the kid has to be forced to fit the school, but that he hasn’t found the right place yet.

The super-talkative mama from Arkansas, of two grown daughters, one of whom has ADD, who searched for years to find appropriate help for her daughter, never quite finding her what she needed.

And many, many others. Some who didn’t tell their stories but just nodded in recognition, some who found a kindred spirit in another parent. I feel so honored to have met you!

May 24

Thoughts on diagnoses / Grief

When my son was 4, I took him to the only psychiatric clinic I could find in my area that said they would diagnose ADHD in a child as young as he was then. I took him because I KNEW there was something wrong. Something off. Something beyond the “mild sensory processing disorder” that we’d been told he had a year before, by a clinic that wouldn’t accept our insurance and that wanted $180/week for therapy. He was wild – crashing into everything (the sensory processing), screaming, not falling asleep until midnight or later every night, refusing to comply with anything we said, and destroying every thing he touched, either intentionally or unintentionally. At that time all I knew to call it was ADHD – and within 10 minutes with the child psychologist she was ready to refer us to the psychiatrist so that we could get medication for our son. Within 12 minutes I was sobbing in her office – my answer to her question, “How are you doing?”

Since then there have been more diagnoses, more doctors, more evaluations, and many, many different medications. Some of the therapies, like his weekly visits with his OT for handwriting, have helped. Some, like the 3 different talk therapists we took him to, haven’t. At home we’ve vacillated between hardline responses to his behaviors, which have created frustration and misery for parents and child, and an attempt to ignore everything except extreme safety issues and basic respect for his family, which works best but requires a HUGE effort to remain calm (or at least seem calm, which is much different than actually being calm) and which tends to give me a raging tension headache at the end of most days.

Unlike the other diagnoses we’ve heard doctors give to Little J, this one seems very, very different.

So now we’re headed towards another diagnosis: FASD, or fetal alcohol spectrum disorder. I wrote about it a little bit on the Mom’s View of ADHD blog already, and I’m sure I’ll write about it more and more as the summer progresses and we go through the evaluations and the process of coming to terms with it all. Unlike the other diagnoses we’ve heard doctors give to Little J, this one seems very, very different. For one, unlike ADHD, there is no medication that will help my child get over the brain damage he received as a result of his birth mother’s alcohol consumption when she was pregnant with him. Strategies that kids and adults with ADHD can use to help them function really well in life aren’t likely to help Little J. Medications like the ones he’s on – a stimulant and a mood regulator – can help, but they aren’t going to make him magically “normal.” And from what I’ve read, there is no therapy – no talk therapy, occupational therapy, or any other therapy that will suddenly make his brain whole and fully functioning. The only kind of therapy that will probably help him is therapy and education that his dad and I get – he’s not going to change the way his brain works, so we need to change the environment he’s in. This is hard. This is – literally – life changing. And it’s also really, really sad.

I know I sound down. I am. Although we are seeking this diagnosis because we’re seeking answers, it also seems like a more final diagnosis than the ones we’ve gotten in the past. Little J can grow and change, but because he has brain damage there is a limit to how far he can go. The other diagnoses didn’t seem so limited to us. Standard procedures do not apply.

Adrienne Ehlert Bashista lives in central North Carolina with her husband and 2 boys, ages 8 and 11. She is a contributor and co-editor to Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories. To read all of Adrienne’s posts on this blog, please click here.

(image from Psychology Today)