Archive for the ‘ SPD ’ Category

When Laws Are Made To Be Broken For Kids With Special Needs

Tuesday, December 10th, 2013

J.J. Hart, a three-year-old boy with autism, used to sit around staring into space a lot. He barely spoke, and had temper tantrums. Then his dad started looking into animal therapy for kids with autism. He bought a few chickens for J.J., who dubbed them “ducks.”  These days, his mother has said, “He’s able to communicate much better. And it all has to do with the chickens. He plays with them. He cuddles with them. And he runs around the yard with them…. It’s made a tremendous difference.”

A year ago the town where the Harts live, DeBary, started a one-year trial program that allowed residents to keep chickens in backyard coops. Now the city council has announced the program is ending; J.J. will be forced to give up his chickens by December 31. As council member Nick Koval said, “It’s unfortunate, and I sympathize. But we spend a lot of time and money establishing codes and ordinances for the protection of the citizens and taxpayers of this community. And I believe that they [chickens] belong in agricultural areas.

While it’s more common to use horses and dogs in therapies, J.J. has a connection with the chickens. Given that kids with autism are very sensitive to change, getting rid of the chickens could be traumatic. J.J.’s parents have hired a lawyer to get the council’s decision reversed.

Perhaps this story is hard to understand if you don’t have a child with autism or other special needs. Perhaps the pre-parent me would have wondered what the big deal was to give up the chickens. But now, I understand what it’s like to do anything and everything to help your child with special needs thrive, whether it’s chickens or alternative forms of therapies, as we’ve tried over the years. When you find something that works, it can seem downright miraculous.

Stories like this have cropped up over the years. Last January, a boy with Down syndrome in Coral Springs, Florida, who had a house-trained therapy pig was granted the right to keep him after officials threatened to fine his mother to $500 a day for violating local ordinances. In Lexington, Kentucky, parents of a three-year-old with cerebral palsy built a playhouse where he could get physical therapy; the local Homeowners Association asked them to take it down. Last year, because of their case, a House committee nullified deed restrictions on small outdoor structures deemed medically necessary for kids 12 and young. And in Spring, Texas, in 2012 a local family won the right to keep a baby kangaroo to help their 16-year-old daughter, who has Down syndrome.

My heart goes out to J.J. and his parents; I hope they win their fight. If J.J. and his chickens lived in our neighborhood, if it were a matter of enabling a child, then to me there would be no question: Let the boy have his chickens. It’s the humane thing to do. The mayor of DeBary, Bob Garcia, agrees. As he’s said of the chicken program, which he hoped to extend until 2015, “It had so many benefits for this child. And it would have shown that we’re a community that is compassionate and understanding.”

Image: Facebook/Save JJ Hart’s “Ducks”

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Would You Cure Your Child’s Special Needs?

Thursday, December 5th, 2013

Lately, there’s been lots of news about “curing” special needs—scientists pinpointing the gene for autism or discovering it’s possible to switch off the genetic material responsible for Down syndrome. If you love a kid with special needs, this can be troublesome to hear. So when when there’s research that will help our perfectly imperfect children, it’s reason to rejoice.

Oxytocin can enable children with autism to process social cues, finds a new study from Yale Scale of Medicine. Given as an inhalant, the hormone generated increased activity in parts of the brain associated with social connection. In another study released earlier this fall, researchers at John Hopkins and the National Institutes of Health identified a compound that bolstered learning and memory in mice with a Down-syndrome-like condition; they say it has promise for humans, too.

I’d do anything I could to improve life for my son, Max. He had a stroke at birth that lead to cerebral palsy. But give him a new life? That’s so hard to wrap my head around.

If you’d asked me, before I had a child with special needs, whether I would want to prevent autism, Down syndrome, cerebral palsy (CP) or any number of disabilities, I would have said yes, unhesitatingly. Then I had a child with special needs. And now, there’s no longer a black and white answer.

My son Max is not defined by his disability, but it is a definite part of who he is. I don’t look at him and see a child who needs to be “cured” or “fixed.” I see my child, a cheerful, funny, inquisitive, charming kid (with really good hair). Research that seeks to “cure” disability and wholesale eradicate it concerns me. What kind of awful (not to mention bland) world would we live in if everyone fit the societal mode of “normal?”

The research that seeks to help with symptoms, however, is welcome. If there were a way to permanently loosen up my son’s stiff fingers and feet, I would (CP) causes muscle spasticity). If there were a drug that could help Max better pronounce words—which he tries so hard to do—I’d give it to him in a heartbeat. Max knows that he has CP, but he hasn’t yet expressed to me how he feels about having it. He takes his condition for granted. Perhaps he will someday wish he didn’t have it. But as his parent, even as I try so hard to empower Max to the best of his abilities, I know I’d miss his disabilities if they were gone. He’d be a different child. Perhaps that sounds terribly selfish, even cruel; it’s hard to comprehend unless you are a parent of a kid with special needs—or a person with one.

Lately, I’ve been exchanging emails with an adult who has cerebral palsy and reads my blog. Yesterday, she wrote: “While there is a part of me that knows what I don’t have, and I used to grieve for it, I can honestly say that I am at peace with who I am now. Now, if I could have one wish granted, I would not ask for the ability to walk without my crutches. They simply don’t bother me anymore. There is a part of me that is afraid that if I wasn’t differently-abled, I would be a totally different person with a different personality.”

I knew exactly what she meant.

I would not want a whole other  child, because I love the one I got.

From my other blog:

15 things special needs parents are thankful for

The anti-stress strategy that actually works 

I am officially hired as Max’s spokesperson

 

Image of mother and child via Shutterstock

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Blatant Disability Discrimination vs. Cowardly Discrimination: Which Is Worse?

Monday, December 2nd, 2013

Obviously, any kind of discrimination against kids and adults with disabilities is troubling. But two recent headline-making incidents have me mulling over blatant discrimination vs. the cowardly kind.

“You are parked like a complete jackass!” read the note left on the windshield of a wheelchair van lift belonging to Desiree Parisien, who has muscular dystrophy and lives in Saskatoon, Canada. “You are in two spots, one of which is for pregnant ladies! Stupidity is not a handicap, use your wheelchair sticker for a better cause. Don’t use it for an excuse.”

Because Parisien drives a side-ramp van, she typically requires more room than the usual wheelchair parking spots provide. It’s not the first time she’s gotten these sort of notes, she’s said. “Fundamentally, it shows that there is a sea of non-understanding in the ambulatory world,” said Judge David M. Arnot, Chief Commissioner of the province’s Human Rights Commission. Not to mention non-decency.

Then there’s the story of Lexi Haas, an 11-year-old girl who has kernicterus, a form of brain damage caused by excessive jaundice. As her father, Dr. Ken Haas, told CBS news, the family was in Savannah, Georgia on a trip and went to visit the Ships of the Sea Museum. They were stopped at the doorway by an employee, who said Lexi’s wheelchair was too dirty to come inside. Lexi was permitted to use a wheelchair owned by the museum, but she couldn’t because it lacked straps to hold her up. The family was then told Lexi could sit outside and watch a video while the rest of the family went through the museum. Eventually, the museum sent a letter of apology to the family, noting that the employee had been dismissed.

Both incidents make you mad and sad if you love someone with disabilities (or have one yourself). But as the parent of a kid with special needs, the windshield-wiper message triggered another emotion: fear. It’s unsettling to hear about awful things people think about those with disabilities, the prejudice they harbor and their utter ignorance—and think about how that someday might affect your child.

The inaccessible places of the world and the people who blatantly discriminate are ones we can rally against. There are laws on our side. We can raise a ruckus, make change happen, get apologies. (This mom, for one, recently spoke out when her daughter with disabilities couldn’t participate in a pageant). But the cowardly people of the world—the anonymous haters who leave nasty messages on windshields, on your blog about your child with special needs or on your YouTube videos—can trigger your worst concerns.

Thanks to social media, stories like this can end up doing good. People who have no idea why a wheelchair van lift would take up two spots may now understand and not cast judgment next time they see that happen. And of course, you can choose to pity the ignorant and the prejudiced for having to live with themselves. As parents, the best we can do is continue to speak out and raise awareness, and hope that we are creating a kinder, more understanding and educated world for our kids.

From my other blog:

The grief that won’t let go

A mom seeks justice, and gets an amazing apology

I am officially hired as Max’s spokesperson

 

Photo of note: CTV News video; photo of Lexi Haas, Facebook

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How The Brains Of Kids With Autism And Other Special Needs Work

Monday, November 25th, 2013

If you’re the parent of a child with autism or other special needs, you may often wonder just how their brains work. Obviously, any kid’s brain is somewhat of a mystery, as you may well know when your so-called typical child has an epic meltdown for no apparent reason. But if you have a kid who has a learning disability, autism or cognitive impairment, some days you may ache to know what is going on inside their heads—and whether there is anything you could do to help them function better. That’s the question we’ve pondered literally since our son, Max, had a stroke at birth that resulted in brain damage.

Two new studies have uncovered differences in the brains of those with disabilities. Neurons in the brains of people with autism respond differently to facial recognition than those of people who do not have the condition, reveals a study by researchers at Cedars-Sinai published in the journal Neuron. Experts say it could lead to a greater understanding of autism.

Another study, from Michigan State University, has discovered that children who have a nonverbal learning disability (NVLD) have brains that can develop differently from those of other children. They did brain scans on 150 children ages 8 to 18 and saw that children with NVLD had smaller splenums than both children with other learning disorders such as ADHD and ones who were typically developing. The splenum is part of the corpus collusum, aka the dividing wall of fibers that separates the left and right hemisphere. These findings, researchers say, could lead to better intervention strategies.

From the get-go, Max’s neurologist told us to pay no attention to the scary scans of Max’s brain. “Look at what he is doing, not what he isn’t,” he said. “Focus on that, and on helping him reach his potential.”  We’re lucky to be living in a time when there’s such groundbreaking research on the brain. It’s fascinating. But as much as we may yearn to know why our children’s minds work the way they do, as much as we may hope for magic cures, science on brain function won’t help our kids in the here and now; only therapy, home-grown efforts and hope and faith can.

From my other blog:

The grief that won’t let go

Holiday gifts for kids with special needs 2013

One of the toughest parts of special needs parenting (and the most rewarding)

 

Image of child with arrows via Shutterstock

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More Cases of ADHD—But Kids Are Missing Out On Treatment

Friday, November 22nd, 2013

There’s been a 42 percent rise in reported cases of Attention-Deficit Hyperactivity Disorder, per new data from the Centers for Disease Control and Prevention (CDC). About 6.4 million children 4 to 17 years old in the United States have received a diagnosis of ADHD, as reported by their parents—that accounts for 11 percent of that age group. Although 3.5 million children are said to be on medication for ADHD, 18 percent of children with ADHD are not getting behavioral therapy or medication for it.

Kids are typically being diagnosed by age 6 says the study, published in the Journal of the American Academy of Child and Adolescent Psychiatry. Children with more severe ADHD tend to be diagnosed by age 4. “This finding suggests that there are a large number of children who could benefit from the early initiation of behavioral therapy, which is recommended as the first-line treatment for preschool children with ADHD,” says Susanna Visser of the CDC, lead study author.

Signs of ADHD include extreme impulsivity, an activity level that gets in the way of interacting with other kids (such as not taking turns) and a super-short attention span—as in, a child who is moving so quickly he isn’t taking time to take in information or problem-solve.

To learn more about ADHD:

Take this quiz: Could your child have ADD/ADHD?

Check out this article on diagnosing the condition and 8 New Facts About ADHD

Visit The National Resource Center for ADHD

 

From my other blog:

The grief that won’t let go

Holiday gifts for kids with special needs 2013

One of the toughest parts of special needs parenting (and the most rewarding)

 

Image of boy standing against blackboard via Shutterstock 

 

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