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
Jan 20

Events That Change Everything

Transformative experiences mark the entrance from one phase to another. There are many such experiences that you can try to prepare for. Having a baby, getting married, and moving out of your parents’ home. Some preparation is possible, though many feel that despite knowing ahead of time of the change to come, despite in many cases even making the choice to venture into new territory, they still feel unprepared. Other events come as a shock, like a death or a natural disaster or even the revelation that your child has special needs. They are completely unexpected. One’s life is changed for better or worse and often in combination.

Continue reading

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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Aug 19

Bridging into High School: Choosing Course Levels

Although the junior high teachers and case managers inform their high school counterparts what they feel is best for your child academically, remember that as parents and guardians, you should have a say in your child’s education.  Don’t let anyone label your child.  By the time your child is ready for high school, if you’ve been an active part of his or her education on the home front, you know just as well as the Ph.D.’s what your child’s strengths and weaknesses are.  And you may know what your child wants to do with his or her life.

Marie wants to go to college.  She wants to be a pre-school teacher.  She needs as much of a college preparatory curriculum as she can handle.  True, she will need assistance with all this.  These new teachers as well as the new Special Education Department need to become an active part of Marie’s support system in school and to provide me with a schedule so that I can keep her on track at home.

Continue reading

Jul 29

Bullies Beware

As I have said before, Adderall slows Marie down so that she has a chance to think before she speaks.  It silences her hyperactivity.  She becomes quiet.  Hyperactivity is part of lunchtime recess.  Without the excitement the other children display during recess, Marie sits out a lot.  This can make Marie a prime target for bullies.

Because she is not the act out aggressive student in class, she can fall into the shadows.  The teacher becomes busy with boisterous students and moving on with lesson plans and may not notice someone making fun of Marie.

Like most parents, I dislike bullying.  In fact, when someone teases a special needs child, someone who may not understand or is slow to realize that everyone is laughing at him or her, it becomes criminal in my mind.  Because once someone becomes a target for bullies, most children steer clear of that child.

Since Marie has so many issues that the teachers need to be aware of, I try to curb bullying from the home front when I can.  The first thing is to get Marie to talk about it.  In the beginning she didn’t realize that students were making fun of her.  I noticed it during a fourth grade classroom party when a boy called her “Ding Dong” and Marie responded.  I glared at the boy but didn’t say anything at the time.  I wanted to talk to Marie about it first.   

But things don’t bother Marie like they bother me.  Is it the innocence, or am I too sensitive?  Not until junior high when fellow students mention how slow she is to answer questions and tell her she is dumb does she have trouble with it.  And this time I found out that she was being teased when one of her siblings at home said something to the effect that she was stupid and I heard her response. 

“That’s what the kids say at school.”  The comment was said resignedly, not angrily, and it pierced my heart.     

I have spent Marie’s lifetime telling her she is not stupid; she just learns differently.  She needs to believe in this just as she believes in God, and she will be fine.  Confidence in oneself is the best ammunition against bullies.

Of course this is when bullying consists of standard words, not profanity.  No one should use profanity to a child.  Never permit things to become physical.  Hair pulling, spit balls, or shoving must be reported to someone in charge. 

Does your Easy to Love child have bullying issues?  What do you do to counteract them?

Jun 28

Summer Vacation with ADHD: Is That Possible?

Gershwin’s popular tune “Summertime and the Livin’ Is Easy” may capture the season’s tempo for many, but it does not characterize summers with an ADHD child!

Our little hurricane longs for school-free days, but when it actually arrives – he’s a shipwreck. Without the forced structure of school he quickly unravels and becomes much more difficult to manage, to say the least.

During the adjustment period, routine tasks like getting breakfast (or anything that’s done at a different time than usual) become an all-out battle. Before 9 a.m., I am an exhausted wreck and he’s angry and confused.  This is why medication breaks don’t happen over summer or other school holidays. Tragically, none of us can get through much more than one medicine-free day with him. His inattentiveness and impulsivity drive us to distraction.

Learning never really takes a holiday either. With virtually no short-term memory, he must practice skills throughout the summer. Summer school is ineffective, as the learning is gone by day’s end and it typically ends with six weeks of summer left. So, reading, ‘riting and ‘rithmetic, continue throughout the summer. While I try to make it “fun,” he knows it’s a drill. Plus, it makes his “differences” painfully obvious when his older sister is not doing math facts and reading sight words to earn TV or computer time.

Computer camps – his favorite instant gratification/stimulant-seeking pastimes – swim team, and amusement parks fill in the gaps and provide some sense of order. This year, as I tell myself every year, will be better. I have joined the “if you can’t beat ‘em, join ‘em” camp and embraced digital learning. We’re trying two programs:

  1. Didj Learning Edge by Leapfrog, www.leapfrog.com, will replace paper and pencil math facts practice. The hand-held Didj drills players on their math facts, rewarding them with online games such as Android Invasion that lets them be their favorite characters, including my all-time nemesis, SpongeBob Square Pants.
  2. CogMed is a five-week computer program designed by the Karolinska University Hospital of Sweden to improve working memory, a major component of the behaviors that accompany those with ADHD.  (See www.cogmed.com/trainging-of-working-memoryfor more information about how this program improves academic and everyday functioning.)

The program includes 25 sessions, 30-40 minutes each, that trains the brain to exercise its working memory muscles. “Stanley” the robot guides users through the exercises and rewards effort with a “Robo Racing” video game at the end of each training session. As I write this, hurricane boy just finished his first session. The video game aspect has great appeal, so we’ll see how it goes as the training becomes increasingly challenging. I can already see how the games will push his sequencing and memory skills and how he’s already learning from his mistakes, without too much frustration, … yet. Still, I remain encouraged.

Another attractive feature is the ADHD coach who comes along with the $1500 fee. She explained how the program works, got us online, and calls us once a week to check-in and keep Hurricane’s motivation up.

Behavior modification is part of the package as well. A rewards poster keeps us on track to earn a “prize” after each 5-days of training. He’s picked two no-cost rewards (going to night swim practice, having friends come over) and two low-cost rewards (Nerf and Star War toys); a Wii/DS game is the big reward to come at the end of training. Rewards are given on the condition that training is done without major whining, tantrums, etc. My anticipated rewards are:  an increased ability to understand written and oral instructions, and better retention of daily tasks (working memory).

This “fun” digital summer school begins right after we’ve returned from an 18-hour (both ways) driving vacation to Mount Rushmore and Yellowstone National Parks. As recently as two years ago, I would never have considered this trip. However, the Hurricane was amazing. Of course, it helped that we allowed extended periods of “screen time:” DS Nintendo games and movies on a borrowed portable DVD player. Yet, we did a lot of hiking and lots of driving between scenic locations, which ordinarily would have left all of us running madly into the wild as the Hurricane unraveled before our eyes – waking everyone at 4-5 a.m. by running through the hotel room, repeatedly opening and closing doors, etc. …. Instead, he found a walking stick that fit him and led the way on some strenuous hikes. He had the best bird-watching eyes of all of us and was, overall, a joy to have along. When the driving became too much, he made a fort in the back seat with his blanket, and presumably shut out the rest of the world. Despite Yellowstone’s remarkable beauty, his favorite part of the trip was Mount Rushmore, as the faces were much bigger than he imagined. Awesome, Hurricane. Thanks for a great summer vacation.

Mar 12

ADHD gender stereotypes — and gender-busting

I can’t help noticing that Frank and I are the only members of the male gender posting on this blog. That’s cool – and not entirely unexpected.

I’m the writer in our family. My wife Chris has ADHD and learning disabilities. Oddly enough, she’s had the jobs that require the most organizational skills. Banking, for one. Supervisor at the local YMCA for another. When I come into the YMCA to exercise or to pick her up for lunch, it seems as if all 8,000 members are there at once. Chris is flitting around the place, attending to member and staff needs. I stand there, amazed, wanting to flee the chaos to the quiet safety of my car. How does she do it? Her ADHD helps her multi-task, yet it also contributes to flittering. I’m standing still, sometimes because I’m depressed and other times because I’m thinking up clever blog posts like this one.

We complement one another. Sometimes we flustrate one another. That’s not a word, I know, but just a handy combination of frustrate and fluster.

We’re also a bit of an anomaly. As we’ve seen on this blog, it’s usually the adult male in the relationship who has ADHD. Most diagnoses of childhood ADHD are in boys. Hyper-boys grow up, meet lovely and competent women, sweep them off their feet and into marriage.

My friend L is married to H. H is a psychologist and L has all the traits of an ADHD boy grown into a hyper-adult. He’s a Brainiac but never quite reached his full potential. Wherever he goes, he leaves a trail of chaos in his wake. When all of us lived in Maryland, L said he was coming over the make me a gourmet birthday dinner. He’s a good cook and it gave all of us a chance to hang out.

Later that evening, Chris and I surveyed the kitchen. Every pot and pan in the kitchen was dirty. Red sauce stains were on the walls on the floor. Empty spice containers littered the counter like empty beer cans after a frat party. The stove was still on and cabinet doors remained flung open.

“The meal was good,” I replied, surveying the damage.

“Never again,” said Chris.

After that, we ate out with L and H.

We also were in an Adult ADHD Support Group. The men and one woman (Chris) was in the support group while the women (and one guy – me) shared our horror stories. Never graduated from college. Forgets to pick up the kids from school. Can’t keep a job. Leaves a terrible mess when he cooks dinner. And so on.

This was 1995. The Maryland suburbs that ring D.C. are made up of some of the best-educated people in the U.S. Liberals, mainly, just like me, an out-of-place Westerner. The women were strong and had careers in business or medicine or government.

But even in the closing decade of the 20th century, three decades into the women’s movement, the men were still considered primary breadwinners. So when they have ADHD, they not only struggle with inattention and hyperactivity, they also are underachievers in an overachieving world. And it’s not just their spouses who notice. One of the first questions asked in D.C. is about your work. My buddy L worked at home as a freelancer. Later, he was also a stay-at-home dad. I saw the strange looks that other men gave him. I guessed their thoughts: you’re not even a lobbyist? Remember that this is a place where you can get into policy wonk discussions at any time and any place.

One fine spring day during a clean-up hike of the Potomac with the Cub Scouts, one of the other dads found out that I worked at the National Endowment for the Arts. He was a conservative think-tank lobbyist and proceeded to tell me all the reasons the arts shouldn’t be government funded. Another adult leader chimed in that the arts were crucial and deserved even more federal funding. We were engaged in a lively debate when one of the Scouts came up and told us to get back to work. We looked at each other sheepishly and then returned to the task of picking up Snickers wrappers from the historic trails along the Potomac.

When I first met Chris 33 years ago, I was drawn like a hummingbird to her beauty and her vivacious nature. She was the lively one; I was the laid-back one. Later, she uncovered her learning disabilities and ADHD. I uncovered deep wells of depression. We discovered them, I should say. Some of it came about after the birth and toddlerhood of our son Kevin revealed his ADHD. It took us decades to unwrap all of these secrets. We didn’t do it alone – and it’s an ongoing process.

Cross-posted from hummingbirdminds.