Discriminating against kids every day

Every day some parent of a kid with special needs is being told that their child can’t participate in XYZ activity either in school or out. Check out this link to a video and you’ll see what I mean.

bit.ly/U4AxPf

The schools tell parents they are not required to provide assistance for these activities since they occur after school, take place off the school grounds, or do not involve academics. I know this is true because I’ve been told that on a few occasions. You may not be aware, but your child’s IEP can include supplementary aids and services for extracurricular activities and after-school programs. Who says? The law says.

The Minnesota Supreme Court ruling in Independent School Dist. v. Minn. Dep’t of Education  (Oct. 7, 2010)  held that IDEA requires school districts to take steps to provide extracurricular and nonacademic activities to afford the student an equal opportunity to participate. The IEP team must determine which activities are appropriate and include them in the IEP. These activities are not limited to activities that “educate the child.”
 

So the next time someone on the IEP team wants to exclude your kid from an activity because they don’t have the resources, you might want to reference the ruling above and ask the team what they think that LAW means.

It's a dirty little secret -- seclusion, restraint, and aversives

It’s a dirty little secret that no one wants to discuss. It’s the seclusion, restraint, and aversives done to children in special education across our country. Seclusion and restraint are highly dangerous interventions that have led to death, injury, and trauma in children.

Think it doesn’t happen in this day and age. Think again. Children with autism are regularly and legally restrained and secluded against their will.

There is no federal law that protects children from seclusion/restraint. Bills have been introduced by Congressman George Miller (April 2011, the Keeping All Students Safe Act, H.R. 1381.) and Senator Tom Harkin (December 2011, the Keeping All Students Safe Act, S. 2020.)

Published in the January 2012 issue of Psychology Today, Kymberly Grosso, discusses this issue and what autism is like in real life. To learn more, click on the link below.http://

http://bit.ly/TsiIdS

And, if your special needs child comes home and is behaving differently, check for the signs below:

·       Excessively withdrawn, fearful, or anxious about doing something wrong.

·       Shows extremes in behavior (extremely compliant or extremely demanding; extremely passive or extremely aggressive).

·       Doesn’t seem to be attached to the parent or caregiver.

·       Acts either inappropriately adult (taking care of other children) or inappropriately infantile (rocking, thumb-sucking, throwing tantrums).

·       Frequent injuries or unexplained bruises, welts, or cuts.

·       Is always watchful and “on alert,” as if waiting for something bad to happen.

·       Injuries appear to have a pattern such as marks from a hand or belt.

·       Shies away from touch, flinches at sudden movements, or seems afraid to go home.

·       Wears inappropriate clothing to cover up injuries, such as long-sleeved shirts on hot days.

If any of these signs are present, go directly to the school and start asking questions and/or observe the classroom.

Shoot for the Moon

Thomas Edison, Frank W. Woolworth, Walt Disney, Winston Churchill, Agatha Christie, Charles Darwin, Alexander G. Bell, Samuel L. Jackson, and Albert Einstein.

These famous people all have one thing in common. Can you guess what it is? Give up? They all had learning disabilities. It's true.

Let's play a game. Read the description below and see if you can guess who the famous person is before reading the answer.

• His head was large at birth. His mother didn't agree with those who felt that the child was abnormal. He was sent to school, but the teacher thought him to be mentally ill. The mother withdrew the child from school and taught him herself. As it turned out, he might have done well in vocational education.
• This was another child who was slow in school work. About the only thing this apparently right-brained individual had going for him was his vivid imagination, which used to bother his teachers, especially when he doodled.
• This statesman could be called academically disadvantaged. He failed grade eight, did terrible in math, and generally hated school. He continually worked to overcome a “speech impediment.” Still he was upset by people who were “inebriated by the exuberance of their own their own verbosity.”

And my all-time favorite (drum roll please) .... This person could not talk until the age of four. He did not learn to read until he was nine. His teachers considered him mentally slow, unsociable and adrift forever in his foolish dreams. Thought to have Aspergers, a form of Autism, he failed the entrance examinations to college. He lost three teaching positions and then became a patent clerk.

The answers: Thomas Edison, Walt Disney, Winston Churchill, and Albert Einstein
 

As an advocate for children with special needs, I wish I had a dime for every time an educator told the parents of a child that their son or daughter would never be able to XYZ (you name it) because of their disability. I dislike that statement because I think it's an excuse for not teaching the kid.

I wonder how Albert Einstein's IEP (Individualized Education Plan) would read today. I'd love to sneak a peak at all his evaluations.

If educators could be wrong about these famous people with disabilities, why do they feel they are right about your child?

I tell my clients to have high expectations for their children. Shoot for the moon and don't settle for less. If you don't expect your child to succeed, who will? Good luck and here's to the next Albert Einstein among us.

 

Disability is Natural

I visited one of my most dear friends last week in California. I'm 54 years old and we have been close and a part of each other's lives since we were in 1st grade. We're like sisters. I wish I could say this was a fun trip. It wasn't.

My friend is dying of cancer. It started with breast cancer 8 years ago. She lost a breast which is sad, but at least we were relieved to know that they got it all. Unfortunately, they didn't get it all. Over the next seven years the cancer spread to her liver, then spine, and now brain.

Up until last year she was a professor and chair of the business school at the college in which she taught. Brilliant, beautiful, generous, and kind would be a few words to describe her. She always did things in a big way! From literally designing and building their home to making six pies at once, she was the ultimate multitasker before anyone had even heard of the word.

Even though I knew she was not doing well nothing could prepare me to see her wheelchair bound. This beautiful woman who had been an athlete all her life, never smoked, and hardly drank alcohol was now disabled. Without getting too graphic here, I'll tell you that she had to be lifted from the wheelchair to use the toilet.

Seeing her that way reinforced the notion for me that disability is natural. As people age they become more likely to be disabled whether by using glasses for reading (assistive technology) or using a cane or wheelchair instead of walking.

As an advocate for children with special needs I've seen alot of discriminatory actions and unkind comments made about this population of people. It's sad. Why is it that we want to segregate these children into "special education" classrooms? Why is it that parents of disabled children must fight with the educational system to make certain that their children are taught and learn too? Why do we assume that these children don't know what they want?

Several years ago I helped bring Kathy Snow to Michigan to speak to a roomful of mothers, dads, educators, and advocates about children with special needs. Kathie Snow is a wife and mother, as well as an author, public speaker, trainer, consultant, and host of the Disability is Natural website.

Her message is simple -- For too long, people who happen to have conditions we call "disabilities" have been subjected to devaluation, marginalization, prejudice, and more.

My friend is now disabled. It doesn't change the way I think and feel about her. In fact, there's a very good chance that at some time in my life I'll be disabled. I hope that as a nation we can look at those with disabilities in a new light. I don't want to be marginalized, devalued, or the target of prejudice as I age. Do you?

If you're interested in learning more about Kathy Snow click on the link below.http://bit.ly/V5VRES

The reason I do what I do...

It's still amazing to me how one person can positively change another's life! That's how I feel about my son, Evan. He was diagnosed with autism when he was three-and-a-half years old. That was 1998 when little was known about this disability.

The day I received that diagnosis, I became a different person. And, frankly, upon years of reflection, a better person. Through it all, with prayers and lots of support from friends and family, I remained hopeful. I pushed the educational system to teach him so that one day he might live independently. 

Re-diagnosed as having Asperger's Syndrome (which is still on the autism spectrum) he's doing well and plans to go to college next year.

I'll be writing this blog as COO of Learning Outside The Lines.

If I can give parents of children with special needs one thing, it would be hope. Evan is the reason I do what I do.

Desperate Mom in Michigan

I've been an advocate for children with special needs for more than 14 years. I became an advocate when my son was diagnosed with autism in 1998.

I'm happy to be learning how to blog because now I can better tell my story and those of other parents who struggle just to get through the day. Having a child with special needs is demanding -- to say the least -- even for parents whose children are considered "high functioning."

For example: I have a friend who has two little boys on the autism spectrum. Her full-time job is nonstop till she collapses in bed at night. Besides all the regular stuff that parents do for their children, Linda's day also consists of scheduling and then taking her kids to back-to-back therapy appointments every day -- speech and language therapy, occupational therapy, sensory integration, and structured play dates. The play dates are important because her children don't have enough language and natural communication skills to have actual "friends" at school. Children with autism don't pick up on social cues. Most must be taught very basic social skills that the majority of children learn intuitively. Mom's like Linda are busy. They just do what they need to do for their children day in and day out.

I spoke on the phone today to a single parent of an 18-year-old young man who has multiple diagnosis, including autism. She's still doing everything she needs to do for her kid. This time it's battling it out again with her school district. Even though her son is "high functioning," at 18 years old he can only read at the 2nd grade level. Children with disabilities are supposed to be protected under the U.S. Individuals with Disabilities Education Act (IDEA). She's taken this district to court once before and prevailed because they weren't doing what by Federal and State laws they're supposed to do. That is provide FAPE which is a Free Appropriate Public Education.  

This mother wants what most parents want for their children -- an education so he can get a job and make a living. The fear, anger, and frustration in this woman's voice made me say something that as an advocate I've never said to another parent. I listened to her story and then suggested that she "give up" on this district and move to a more affluent area.

I didn't know her, but I could tell that she was physically and emotionally worn down by an educational system that is broken across this entire country. After I got off the phone, I wondered if I gave her sound advice. I'm not one who gives up easily. Upon reflection, I think I helped her. I didn't tell her to give up on herself or her son. I told her to consider approaching the situation in a different way. There isn't one school district in Michigan that isn't hurting financially. Not one! Having said that, some are better than others. Perhaps moving could give her a new way to look at things with people who had not been or heard about her former educational struggles in that district.

As financial resources within school districts decline, I hope that as an advocate, I don't give up. Some days it seems like the cards are stacked against us. I suppose I'll just keep doing what I do and hope that in some way I'm helping someone and making a difference.

The worst day of my life....

Think of the worst day of your life. Now, multiply that feeling a 1,000 times.

Thirteen years have passed, but I still remember a day in September 1998 when a part of me died.

That was the day my beautiful, healthy, three-year-old son, Evan, was diagnosed with autism spectrum disorder (ASD).

Autism spectrum disorders are a group of developmental disabilities that cause lifelong social, communication, and behavioral challenges in children and adults. The Center for Disease Control estimates that between one in 110 children have an autism spectrum disorder. 

Because of this epidemic, many people now know about autism. In 1998 it was still a mystery. Little was known about the disability, its causes, or how to help children.  
 

Evan is almost 18 years old and doing very well. He plans to attend college next year. I'm COO of Learning Outside The Lines and I plan to help as many children with special needs as I can.