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Help for Indiana Schools: Autism Resources

It’s frustrating as a parent of children with autism to know there are excellent resources out there but that Indiana schools fail to access them.

In too many public schools, autism is an annoyance, especially at the secondary level. This is partly due to not addressing the needs of students with autism at the elementary level.

If students are reached very early with evidence-based interventions, many of the issues for students who respond to therapy, phase out by the time they are in secondary school. There are certain things a student must be able to do in order to be successful at the secondary level, and one of them is the  ability to handle anxiety. Others include being able to attend to a task, take directions that they may not want to comply with, and be able to respond to conflict in socially acceptable ways.

Notice that most of these issues aren’t academic. They are social and emotional. Still, if a child with autism is to be guaranteed access to a free and appropriate education, they aren’t able to access it if they can’t get past the social and emotional piece. Yet, during IEP meetings, schools argue that these  are non-academic issues and schools are not required to address them.

What I’ve experienced in Indiana is a lack of genuine compassion and interest in helping students with autism succeed. I’ve also experienced a shameful scarcity of school attention towards helping students struggling above the precarious precipice of diploma track vs. certificate of completion. (I heard a rumor that “no diploma for people with low I.Q.s, etc.,” could be changing for Indiana but I’m not holding my breath.) Too often I’ve been told or have overheard teachers and paraprofessionals say, “don’t bother wasting your time helping that one, they’re taking them off diploma track anyway.”

Special Education teachers burn out because of lack of administrative support. They are given over-sized case loads that result in students falling through academic cracks. They’re not provided with materials, resources, or training for meeting the students’ needs. The mantra is to do the bare minimum of intervention so that schools can legally pocket the rest of the special education monies. Students in dire need of 1:1 aides are not provided them. Instead, one “instructional assistant” or “para-professional” is given to classrooms, and only maybe 1 or 2 per grade if that. No one student is given enough attention and support. Sometimes, high school students still need 1:1 support. Need is the operative word, and is the word that schools interpret any way they wish.

And where is the accountability for special education dollars? Why is our local area program bankrupt? The money wasn’t spent on my twins with autism, I can tell you that. (They are 22 now.) Was the money (millions) spent on teacher training in my school system? No. Was the money spent on 1:1 paraprofessionals for students with autism in my school system? No. Was it spent on administrative conferences and trips? Yes. Why are we not allowed to see how the money is spent?

Special Education teachers are under strict orders not to offer any services outside of the bare minimum. And because teachers want to keep their jobs, they do what they’re told. If you want services, you, the parent, have to bring them to the table. Remember, the school is not obligated in any way to go above and beyond anything but minimum. This is how they interpret and practice “free and appropriate.” Period.

Not all schools are turning their backs on autism. I hope to find these schools and highlight what they’re doing right. (If you know of one, please let me know in the comments below.) But far too many are doing it wrong. Far too many simply don’t care. What’s more important to many schools is keeping ISTEP scores high so they can attract high-scoring students to their schools via the voucher program.

If your student doesn’t make the administration look good, you don’t matter. You’re an inconvenient annoyance. The school hopes parents will pull the student out of school by the end of the year. If the student has already attended X number of days, they get to count the student for the full year and get to pocket the special education monies without spending a dime on support.

Parents are ill-informed of their recourse options. Even though the state law requires that parents be given the “Procedural Safeguards” brochure at the IEP meetings, few parents have the energy to read and digest it. Most of their energy is poured into getting their student through one more day, working their own jobs, and dealing with their other children. This brochure usually isn’t explained by anyone in the IEP meeting. And parents with low-functioning abilities are too embarrassed to have anyone explain it to them.

Here are some resources every parent with a child with disabilities living in Indiana should use:

Indiana Resource Center for Autism. This organization provides incredible training for teachers working with students with autism. Why aren’t all the schools in Indiana accessing this? Is it time to ask our legislators to  mandate this training for our Special Education teachers? There are also great resources for parents, including a Lending Library and a few helpful videos:

 

Another excellent help for parents when working with public schools is In*Source.  If you’re not getting what you believe your child needs in school, and every IEP meeting is a war zone, this organization can help you. They provide trained support advocates to go with you into the IEP meeting and help you navigate the laws to get your child’s needs met. I am a trained In*Source advocate, but now that I’m a teacher, am unable to be part of this service. These advocates are volunteers, and are passionate about helping kids with disabilities get what they need in public school. Don’t hesitate to contact them for help.

Other (Sort of) Helpful Autism Resources in Indiana:

Autism Society of Indiana

Autism Speaks

The reason I call these “sort of” resources is that they do provide information and fund-raising types of things, but not much practical hands-on help for families living in the trenches. However, I’m not belittling what they do. My focus for this post is for helping parents get what they need for their child at public school.

I love helping parents find answers. What questions do you have about autism, disabilities or accessing public school services? Leave your questions and comments below and I’ll get back to you as soon as possible!  Do you know of a school that does autism intervention right? Please tell me so I can feature them on my blog!

My newest book is available now for pre-order at the following locations. I am so excited and the twins can’t wait to meet you! Our Book Talk will be August 3rd at Manchester Public Library. I will post more information as the date draws near!

Amazon

Barnes & Noble

Indie Bound

Powell’s

“Help for Indiana Schools: Autism Resources” first appeared on Karla Akins’ blog at KarlaAkins.com

Public School’s Answer to Autism: Jail

What kind of society yanks a 10-year-old child with autism from school in the middle of the day, tears him away from his mother (who had NO notice until the moment it happened), and throws him in jail for something he did months ago?

The United States of America. Land of the free. Home of the brave. Aren’t we something? Makes you real proud to be an American, doesn’t it?

Yeah, we really protected society  from danger by cuffing little John Haygood’s hands behind his back and escorting him out to a police car in front of God and everybody in the middle of a school day.

“Excuse me, do you have any paperwork or anything you can show to me?”

John’s mother didn’t have the faintest idea why her son was being taken away in a police car. They finally told her he was being arrested for leaving scratches and marks on a teacher back in October 2016. Felony battery. And now it’s April 2017. Yeah. That’ll teach him. He’ll definitely connect the cause and effect of that one. (Not.)

Since when does our society think it’s appropriate to arrest a 10-year-old boy at school in front of God and everybody in the first place?

The most troubling thing isn’t this one incident, but the fact that this is one of many, many incidents like it. Far too many schools resort to police interference in the elementary school setting. (What better way to condition children to accept a police state? But that’s another discussion entirely.) What I want to focus on here is the lack of common sense schools exhibit when it comes to helping kids with autism succeed in a classroom setting.

Now, don’t get me wrong. I’m a teacher. I don’t relish being kicked, scratched or punched by a student. My granddaughters attend public school. I don’t want them hit or scratched by an out-of-control child. Let’s be clear: I’m not condoning bad behavior. My beef is with the lack of in-class support given teachers and students with autism so that this situation doesn’t occur in the first place. If a student with autism is placed in a regular classroom, and expected to act like regular students, then the school should provide every support necessary for that student to succeed. Instead, from the sounds of it, the student and teacher were set up to fail.

How do I know this when I wasn’t there? Because a child with autism with proper support won’t throw paper balls in class, hurt other students and teachers, or be on his own to react to a reprimand the way this child did. And a teacher, well-trained in autism, won’t react to an autistic student’s behavior in an in-your-face confrontational way, or grab a student with autism and bodily remove him from a classroom.

I know because I have taught students with autism as well as my own children. Children with autism cannot have open-ended expectations and succeed. That’s like asking a child with paralysis in his legs to navigate the school halls without his wheelchair. You don’t physically man-handle any child, leave alone a child with autism. Tactile defensiveness sends the brain into fight or flight mode in kids with autism. You wouldn’t expect a diabetic student to go without checking his sugar or taking his insulin during the school day. And yet, we violate the needs of children with autism everyday in America’s schools.

Most schools in America don’t get this. But they better figure it out because according to the CDC, 1 in 42 boys have autism now.

Wait. Let’s take a moment for that to sink in. 1 in 42 boys have autism.

If that statistic isn’t enough to make you shudder, you ain’t got a shudder button. I don’t know about you, but when I was growing up, I don’t think I even met someone with autism. And now, 1 in 42 boys have it.

If that statistic doesn’t  shout out the fact that your typical children or grandchildren will share a classroom with a child with autism, then you ain’t comprehendin’ what I’m tryin’ to say here.

This problem  of inappropriate services for students with autism isn’t going away. In fact, it’s only going to get worse. And yet, schools in general don’t take the time to train staff about autism, or provide the sensory tools students need to get through a day. Sooner or later a school is going to get sued. And when it happens, I hope it wakes up the whole lot of them.

We don’t expect blind students to read the same textbooks or navigate the building the same way typical students do without the tools they need. But schools expect students with autism to. Far too much  is asked of teachers and students and no tools are provided. How do I know? I’m the mother of twins with autism. I wrestled myself with the schools. I’m now teaching in a public school and I see the lack of support with my own eyes. I experienced the lack of support when the twins were growing up and homeschooled them for almost all their elementary and junior high years.

My book about my twins with autism. Release Date: July 2017!

When I speak of support, I’m not talking moral support. I’m talking about visual boundaries, a 1:1 aide, visual schedules, and the most important thing of all: keeping the student with autism meaningfully engaged. An engaged student doesn’t have negative behavior. Yes, there are exceptions. There are students who refuse to be engaged. I understand that. But most negative behavior stems from students not being effectively, and meaningfully engaged. The activity must have relevance. It must have a clear beginning and a clear end. Students with autism can’t be expected to sit in an open-ended classroom without proper guidance and 1:1 support.

Society, in general, likes to call kids with autism brats. Americans and the world in general are sick and tired of hearing about autism. But they’re obviously not tired enough because we don’t know why 1 in 42 boys have autism now. When will the experts take a good hard look at this epidemic? When the statistic becomes 1 in 2?

When people told me that I needed to spank my sons with autism, I invited them to my house for one hour. One hour. Spend one small hour with my sons and tell me that all they need is a good spanking.

Funny. No one took me up on it. Doesn’t matter. I guarantee you they wouldn’t have lasted more than five minutes back then. (We’ve come a long way!)

Society also wants to believe the rumor that more kids are diagnosed with autism because it’s the new trendy disorder, much like they assumed ADHD to be in the 90s. But that argument doesn’t hold water because autism is the only disorder dramatically on the rise while intellectual disabilities, Down Syndrome and Cycstic Fibrosis remain relatively the same. Something is wrong. Very wrong. And whether or not we find out the reason behind these brains that fire differently and explosively, we’ve got to address the current crisis effectively. Most public schools simply don’t.

My challenge to you is this: find out how your school supports students with autism and then let me know in the comments below.

Does your public school have:

  • A sensory room for students with autism to calm?
  • Teachers trained in autism teaching techniques?
  • Lessons provided in an accessible way for the student with autism so they can learn the same material in their own way?
  • Visual schedules?
  • 1:1 trained aids for students who struggle with volatile behavior? (Not rotating aids — the same aid every single day)?
  • Lessons/activities that provide clear beginnings and endings?
  • Social Stories?
  • The use of video technology to help the student with autism decipher social cues?
  • Extensive social skills and behavior training for the student with autism at the preschool-3rd grade level?

My guess is the answer is no. And folks, that’s just the basics a school should be providing. Just. The. Basics. Instead, most schools are terrified of having to provide something like the list above because it may cost more. Well, guess what. We either take care of the kids diagnosed with autism intensively at the preschool-3rd grade level, or we support them the rest of their lives.

So, until the public schools stop brushing students with autism aside (and hoping and praying to God that their parents will remove them from school and keep them home), kids like John will continue to be arrested, handcuffed, and taken to juvenile detention centers for overnight stays. (I can’t imagine the horror his mother and he went through. She wasn’t even warned of any warrants for his arrest!)

It’s unconscionable. Frankly, it’s child abuse. Students with autism need advocates to stand up for them. I hope you’ll join me in adding your voice to mine.

Public School’s Answer to Autism: Jail first appeared on KarlaAkins.com. Karla Akins is a public school teacher and the author of A Pair of Miracles: A story of autism, faith and determined parenting published by Kregel. Release: July 2017.

Autism grows up: social media, bullies, and boundaries

Autism & Social Media

When we adopted the twins 22 years ago, I couldn’t have known the challenges we’d face with them when they became adults. Besides having to use key-less entry locks to keep things in the proper places, we’re also learning to navigate this brave (sort of) new world of social media. How does a parent with adult children with disabilities help their child through the swamp of online bullying, manipulation, and outright danger of online relationships?

Disability rights advocates frown on parental interference in adult relationships, but what if that adult functions on an eight-year-old level? Isn’t it indeed abuse not to intervene to protect that individual?

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I’ve learned the hard way that I never should have allowed the twins unfettered access to social media. Not that I could have stopped them, really. They’re both tech savvy. They both want to fit in, and they both love the socialization that happens on Facebook. That’s been a huge plus for them socially because they’re more comfortable writing than speaking. But frankly, I wish I didn’t have to oversee what goes on with them online because it’s extremely time-consuming.

In my interview with Gloria Doty, I learned how her daughter with autism was manipulated, raped, and abused due to online relationships gone wrong (the incident is discussed at 57:10).

What my sons have experienced is bullying, controlling and manipulation. But what is worse, I’m terrified one of my guys will contact an underage girl and be misunderstood. This has happened before and we almost had a dad show up ready to kill. We had to talk him down and explain it was a harmless contact. Nothing would ever come of it. He was not very understanding. I don’t blame him.  (Nothing inappropriate was said or done. But the fact my son was 19 at the time and the girl was 14 freaked the dad out as it should have.)

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I’m looking into alternative social media for the guys but there’s slim pickings. PLUS, they want to be where everyone else is. And why wouldn’t they? If Facebook appeals to over a billion people, of course they’re going to want in on the “fun.” (Personally, I don’t like Facebook for many reasons, but that’s another post for another day.)

Do you know how difficult it is to delete a Facebook profile when the owner can’t remember his password? Do you know how difficult it is to keep an intellectually-immature person from creating one in the first place? Do you know how embarrassing it is to have people sending me screen shots of stuff my sons post in innocence but could be taken wrong? (I do appreciate this, by the way. It helps me keep them safe, but still…)

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We’ve gone through several really bad online girlfriend situations. These girls were absolutely ruthless in their bullying and control. One young woman took over my son’s page and wouldn’t allow him to have any of his everyday friends on it. He started using bad language that she used. She Face Time called him every day for hours at a time. It was a nightmare!

At other times one of the guys will post on Facebook that he wants a girlfriend and to contact him if interested.

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Talk about the dredges of society crawling out of the darkness! I now know things about people and sexuality that I never wanted to know. I now have seen things I can’t un-see.

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If you have any ideas about keeping people with intellectual disabilities safe on Facebook, let me know. It’s difficult for the guys to understand that not all young women who say they are young women are really who they say they are. I’m very concerned that some undercover agent is going to bait them and they’re going to fall for it. Worse, I’m very concerned that they’ll be bullied again.

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By the way. While writing this post my husband informed me that one of the twins rang up some international calls. I’m thinking of starting a GoFundMe page…

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Photo Credits:

Photo credit: Enzo Morelos via Visualhunt.com /  CC BY-NC-ND

Photo credit: FixersUK via Visualhunt /  CC BY-ND

 

Teaching kids to touch type

typewriterwriting

If there’s one thing I am grateful for from my public school education in the 70s, it’s that I was able to take classes to learn how to touch type. I can still type about 93-102 words per minute (WPM), and believe me, it’s come in handy when writing books, blogging, and writing research papers! (Thanks, Mr. Geesik!) (I can still hear and see him wiggling his fingers and sing-song saying, “Type, type, type!”)

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Since I have special needs children, and taught many special needs kids in my cottage school, I was always on the lookout for unique ways to teach life skills. One of the coolest tools I discovered  were these ingenious typing gloves from a company called Touchtypers.

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From the website: “Touchtypers is a system that uses specially developed lettered gloves and simple exercises to make it easy for students to learn to touch-type on computer keyboards, using any typing system or word processing software.”

The gloves come with an instruction booklet, but I also used old-fashioned typing books to help my students practice.

touchtypingbook

These gloves worked great! I like anything that helps children self-direct and teach themselves. The only thing you have to do is supervise a bit to make sure they’re actually using the correct fingers and not “cheating.”

I hope you like these gloves as much as I do/did. I don’t get any kind of kickback or anything from this company. But when I experience a great product, I want to tell everyone about it.

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Oh, and when you order the gloves, err on the smaller side because they stretch. Let me know how you like them!

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Meet me in Iowa!

IowaConference

Hi, Friends!

Just a wee update to let you know that I’ll be speaking at the Homeschool Iowa Conference next week!

Here are the topics I’ll be covering:

technology

Technology and Your Homeschool

Is technology really all that important? How should you use it in your homeschool? When should you not use it? Learn some creative ways to integrate technology in your homeschool and have your eyes opened about dangerous technological advances you and your family needs to know about.

autism

Homeschooling Children with Autism

Has God called you to teach your child with autism at home? Do you wonder what the most important skills are to teach? Get practical tips on coping with tantrums, learning social skills, and leading your child to God. As children with autism grow up, what life skills are important to teach them? What can a parent do about aggressive, oppositional behavior? Learn how Karla taught her own sons with autism. What were the most valuable lessons of all? Handouts include practical tips for parents, therapists and teachers.

SpecialNeedsChildDowns

Homeschooling Typical Children and Children with Special Needs Using the Same Curriculum

Do you ever feel as if you’re in over your head? Worried that you aren’t qualified to teach your special needs child? Learn why you’re the expert on your child and their condition. Get practical tips on helping them succeed through finding the right resources, building a supportive network, and accessing the right therapies. Learn what therapies worked and didn’t when Karla taught her own children with autism, ADHD, intellectual disabilities, speech disabilities and dyslexia. Handouts include practical tips for parents, therapists and teachers.

typewriterwriting

Creative Writing in the Homeschool

Have a gifted writer in the family? Learn from published author, Karla Akins, how to foster that gift with practical tips and creative writing ideas. She will also share the climate of publishing today, and a brief introduction to self-publishing in today’s market.

I can’t wait to meet you!

By the way I’m giving away goodies in a drawing while there, too!

  • O Canada Her Story (print) — Autographed
  • Sacagawea (ebook) – Autographed coupon
  • Jacques Cartier (ebook) – Autographed coupon
  • What Really Happened in the Middle Ages (print) — Autographed
  • What Really Happened in Colonial Times (print)– Autographed
  • Scented wax warmer
  • The Pastor’s Wife Wears Biker Boots (print) — Autographed

And those are the just the goodies I’m giving away in the overall conference. My table will also have a beautiful gift package drawing you can enter, too.

See you in Iowa!

If I were coming to your state, what would you like me to speak on?  Check here for a list of topics! And let me know in the comments below!

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To my dear readers

Dearest Most Darling Reader,

My website hosting is weird. Half the time it doesn’t let me in to blog. In its eagerness to protect me from hackers it even blocks ME! And the server people don’t work on weekends (when I have more time to blog) so by the time I’m allowed back in to work, my inspiration has flown to the land of missing socks.

That is part of the reason why I haven’t had a post recently. The other reason is that my husband, Mr. Himself, is in the Philippines doing missions work and I have total care of mother Ellen while he’s away (she lives with us). I spent most of the day yesterday in the ER with her. I also have total care of my twins with autism and another son with bipolar.

I live the life of a circus mom. Seriously. I also have four dogs and two cats. The fact that I’m still walking in an upright position without severe twitching is a miraculous thing.

Mother Ellen is home now, doing well, and Mr. Himself comes home in a few more days. But, of course, the interruptions won’t cease. Along comes the holidays. Not to mention I am doing 60 hours of observation at the local school for part of my degree requirements. (I’m getting a degree in Special Education.)

Does life ever slow down?

No. I don’t think it does.

Leave me a comment and let me know how chaotic your life is right now so I don’t feel alone!

And if you could click on the little twitter bird over at the left and help me spread the word, I’d be most appreciative.

Love,
Karla

Autism grows up: Their first jobs!

God will make a way!

It’s been an exciting school year so far at the Akins ranch.

The twins are in their senior year. They are 20 years old and will be 21 in February. They’ve waited quite anxiously for several years for this to happen and now it has.

They have jobs!

Their vocational school, Heartland Career Center, has a program that helps high school students with special needs gain job experience. The twins get school credit for working at their assigned jobs several afternoons a week.

IsaacJobDay1

Isaac’s first day on the job!

Isaac got a job at Pizza Hut. He had to go through the interview process and he was amazing. We’re so proud of him!

Isaiah got a job at a local bakery boutique. He was so excited on Friday because he got promoted from making pie boxes to doing dishes. I got a text from him: “My boss let me do dishes!”

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Isaiah and his tower of boxes!

When the boys were four years old, one of their psychologists asked me what my aspirations were for them. I told her that I hoped they’d learn to read and be independent someday. She leaned forward in her seat and said to me, “That’s just pie in the sky thinking and you might as well get that out of your head right now.”

Really?

Pie in the sky is pretty tasty if I do say so myself.

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Here. Share a slice with me!

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Dear autism families, how do you spell spontaneity?

Because I love someone (1)Because I really want to know.

Sometimes I fantasize about running errands and grocery shopping. Freely, that is. I mean, without all the logistical hoop jumping that has to take place before, during and after.

Before: rustling up the courage to ask someone to either go with me on errands or come watch the family so I can go alone. Then once I’ve got a helper in tow, figuring out when, where, and how it’s going to happen. Get everyone dressed appropriately and toileted and pray that no one has a bathroom emergency before you get to the store.

 

Excuse me- 'Scuse me- Could I get a (1)

During: finding the patience to deal with the meltdowns in the store and grabbing grabbing hands before they grab another grape or cherry and plop it in their mouth.  Or, fielding the 1.2 thousand text messages you’re getting from the auties and the babysitter while calculating the difference in cost if you buy 10 pounds of cheese versus 1 pound.

 

After: Dealing with the meltdowns because everyone’s tired and stressed from running errands with you. or the stress of being left at home without you. And praying you don’t meltdown yourself. Not that it would do any good or that anyone would notice.

 

Autism parents

On a particularly faith-filled day I might fantasize about going to a movie with my husband or getting away for the weekend. But most days I don’t have the energy for that. (Not the getaway. The thinking about and hoping for it. )

Now, before you think I’m complaining, I’m really not. This is just reality. And it’s so much a part of our lives, that we’ve grown used to it. We don’t stop to think about how we can’t do anything spontaneously until someone says, “want to go to a movie?” or “Want to get away with us for a few days to the Poconos?”

"MP overlook" --Wikimedia Commons

“MP overlook” –Wikimedia Commons

Alright, I admit, we never get asked to go to the Poconos. We live in Indiana. But you get the idea, right?

“Uhm. No. Sorry. Can’t. Can’t leave the boys alone even though they’re 20 years old. Can’t leave Mama alone, either, even though she’s 80 years old (she has Alzheimer’s).”

I know, I know, our life would be so much simpler if we just put them in a home.

But would it, really?

I think it’s just exchanging one stress for another. And besides, what if we warehoused everyone who inconvenienced us?

Seriously, though, the thought has crossed my mind more than once. But the twins are still in high school and it doesn’t seem right to find them “a home” before they graduate. And Mama? Well, she gets a lot more stimulation with us (trust me on this point) than she would in a home. So she’s staying, too.

Jesse and Ellen

My son, Jesse, showing his Grandma his tattoo. It’s his daughter’s name which is also Grandma’s name, too. But she doesn’t realize that. She has her own rocking chair in the church sanctuary. Adorable!

Besides, group homes aren’t exactly a haven. Those hired to work in group homes are paid a pittance. It’s hard to attract quality people to work as a caregiver. No one is going to care as much as family.

Still, family needs a break now and then.  All parents and caregivers need respite. Time to recharge. I wish people could learn to reach out and offer to help, but everyone is so busy. Way too busy. Busy, busy, busy.

I also think people are afraid of kids with autism. They worry they won’t be able to interact with them. I admit, it is a little overwhelming sometimes. But it’s a worthwhile, important endeavor. It’s part of what makes us human.

Caring. Kindness. Love. People with autism need those things.

And so do their parents.

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Sometimes Mama Bear needs to back off

The Bear Family Stand Up

I’m subbing at the high school this week in a special education classroom. That means that my twin sons who take life skills classes are in my department. This is great fun for them. But today my Mama Grizzly showed a bit when a staff member (not a teacher, a support staff) rudely snapped at one of them, first thing in the morning. No hello. Nothing. Just a bark.

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The reason she snapped at my son was valid. It was how she handled it that wasn’t. He’d left his backpack in front of a locked classroom door, and while waiting for someone to unlock it, he slipped into my room to visit with me.

When the staff member arrived, she flew into my classroom and barked, “Whose stuff is that in the hall in front of Mrs. —‘s door?”

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Isaiah, who is almost always cheerful and sweet, and wouldn’t do anything wrong on purpose to inconvenience someone, jumped up from his chair and headed toward the hall door, “Oh, that’s mine.”

To which she responded with a great scowl and angry voice, “Well then move it, it’s in the way.” (Or some such phrase of which I don’t remember the exact words.) All I know, is that I never talk to students that way, and especially not special needs students.

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It’s all in how you say it. And I realize that teachers and staff have bad mornings. But bad mornings should be left at the schoolhouse door. Being a grouch doesn’t model appropriate behavior to students who need it more than anyone. I dare say that teens with autism need it more than elementary-aged children (although they all do desperately need it).

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I did complain to their teacher about her, but as I was doing so, I felt petty. It’s impossible for me to protect them from all the rude people on earth. Especially now that they are adults. (They are 19 but still in school until they are 21.) Still, as an educator myself, I feel that all students should be treated with respect. Tone of voice speaks volumes.

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As I shared in my post on my philosophy of education, school may be one of the only places some kids have that’s a safe place to fall. If they are to feel valued, school personnel must treat them with respect. It doesn’t matter what a child’s label is, they are still deserving of politeness.

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Maybe the snarky  staff member works with hard behavior cases. I don’t know. But I do know that children will act the way you expect them to most of the time. I know this because I’ve worked with some very, very difficult students. No one should ever be valued less because of their limitations or emotional struggles.

i-believe-in-youThis Mama Grizzly is learning which battles to fight. It’s not easy. There will be many more instances, I’m sure, when I won’t know whether to bite my tongue or take up the torch on behalf of my sons. It’s because of their vulnerability and inability to know if an offense is truly something they should be reprimanded for, or an honest, un-meant mistake. A student with autism isn’t always going to process that a book bag in front of the door might be in someone’s way.

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This frustration at the world for not understanding autism is part of what parenting these kids is so difficult. We want people to understand them, and frankly, most people aren’t even going to care. It’s something I’m learning to accept. Even 19 years later.

autismbI think as long as I live, the Mama Grizzly side of me, will always wrestle with the teacher in me, to teach the world how to get it about autism, kindness, and respect. Thankfully, the kind side of me won today, and I didn’t go toe to toe with the staff member. A part of me wishes I hadn’t complained to the teacher.

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Sometimes I feel I should wear a sign that says, “If you think I’m opinionated, you should know how much I want to say and don’t!” There’s so much inside of me that feels like it’s going to blow at times when people are rude to my children or other people with disabilities.

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Only with God’s help am I able to model appropriate behavior when I’m feeling protective. Since my gift is words, it’s also my weakness, and I know I need to temper my opinions with grace.

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Have you ever felt the need to stand up for your children? How did you handle it? What do you think I should have done? Should I have said something or not?

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When autism parents kill–it has to do with hope

autism-1As a parent of twins with autism, I know what it’s like to feel desperate and alone. I know how it feels to have doors close and be left with no one to help carry the load. Professionals go home to their families, most don’t have any idea what it’s like to live with the turmoil. They get to sleep through the night without worrying if their child will harm themselves or wander off.

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Maybe you’re reading this and you have a child with autism. Like me, you probably think you’d never entertain the thought of murdering your child, no matter how desperate your feel. But we have to remember that our experience with autism isn’t another parent’s experience.

Don’t get me wrong. I’m not condoning murder in any way shape or form. I think I’m trying to understand the emotions that drive someone to do such a thing.

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And I do get it. I do. When you are screaming for help and no one comes, you feel backed into a dark corner of no hope. I believe it’s loss of hope that causes parents to kill their disabled children. At least, I think that’s what happened in the case of Dorothy Spourdalakis who murdered her severely autistic son, Alex Spourdalakis, age 14, last year. (You can read the story here.  It’s compelling. Sad. And too often a common story regarding severely autistic children.)

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But in the case of Gigi Jordan, I’m not so sure. In that case it appears it was a selfish act. Or was it? Could it be true that she killed her son in order to protect him from an abusive father? It certainly can’t be true that she couldn’t obtain services for the child. She’s a millionaire. If she couldn’t obtain services, then who can?

Cases like this are just one reason I was prompted to write a book about autism (My book, Autism: Practical Help and Spiritual Hope for Parents, will be available in April 2015). Parents need to know there is definitely hope in this journey. Hope doesn’t make the road easier, but it makes it bearable.

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Autism isn’t who my children are. It’s a name of a disability that causes significant challenges in socialization, speech and behavior. All people with disabilities are precious. planned for and valuable to God. As much as I love my children, I know that God loves them even more, and He has a plan and purpose for their life. I sincerely believe that if we pray and ask God to send us help to cope, and what services to access, He open the doors. At least, that’s what He’s always done for me.

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As I wrote in my book:

“With God all things are possible” Matthew 19:26. I clung to that scripture and believed it the entire time
my twins were growing up and I continue to hold on to it today.  Things I thought they may never do, they’ve done. More than I ever imagined.

God’s Word tells us that we can’t begin to imagine what He  has in store for us (1 Corinthians 2:9). I can testify to this.

I will admit, when I see children suffering, I have a lot of questions for God. This is when I lean on the faith that God knows what He’s doing and He is up to something good, whether we see it right now or not.

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As a Court Appointed Special Advocate (CASA), I see children suffer more than I want to. Life is hard and I certainly don’t want to minimize anyone’s pain. I know what it’s like to feel alone and hopeless. This is why it’s important that Christians reach out to hurting families. If they reject our offers of help, then at least we’ve tried. Without the hope of Christ, what hope is there, really?

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All human life is sacred because we are created in the Image of God. Murder is never the answer to the frustrations of parenting a child on the autism spectrum or a child with any kind of disability. Yes, it’s difficult. But it’s do-able. More than that, it’s the most rewarding thing I’ve ever done. The struggle has been worth the benefits. My sons love me with the purest form of unconditional love I’ve ever known besides Jesus’ love. They are truly God’s gifts to me.

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The following video was prepared for Sanctity of Life Sunday which is in January each year. If you’d like to be a voice for those who can’t speak for themselves, you can find information here: BeAVoice.net.

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