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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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Autism musings: control freaks

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As autism parents, we may find ourselves seeking to control other things around us because we can’t control autism.

I’m guilty of it myself.

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The incident that occurred recently with the young man with autism and the fake ice bucket challenge doesn’t help things.

Sometimes, because of the fear autism brings to our door, and the lack of control we have to change it for our kids, we may find ourselves trying to control other areas of our lives.

fearFor myself, I cope by being a workahaolic. I admit it. I’m happiest when I’m deep into my work as a pastor’s wife, writer, substitute teacher and full-time student (I’m pursuing a special ed. degree.) If I’m busy I don’t have to face the incessant worries of what my twins’ future may hold.

managing fearI need to remember that fear is a liar. Worrying about their future, or whether or not someone will talk them into doing something that will hurt them, is fearing something in my imagination. As a writer, I’m extremely imaginative. You have no idea the things my brain can dream up!  Thankfully, I’m not alone. Thankfully, I can tap into God’s peace when I’m afraid.

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Corrie Ten Boom, holocaust survivor, wrote, “If God sends us on strong paths, we are provided strong shoes.” Sometimes it seems that some people are given more hardship than others. But I have no doubt that God will equip us for these difficult situations if we ask Him to.

fear-1_thumbBut do we remember to ask? And when we do ask, and He provides us with an answer that isn’t what we think it should be, do we turn that help away? Are we too proud? Too embarrassed?

I’ve had to give up a lot of control in my life in order to get the help I need. I’ve had to let go of being afraid of what people think, for one. The woman who comes into my home every day after school to help me with the twins, sees my house at its worst sometimes. She also attends our church. I have had to give up the fear of her telling someone what she sees.

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“Did you know the pastor and his wife didn’t make their bed today? And there were dirty dishes in the sink? And the kitty littler box was full and she’s always behind on laundry? And they didn’t have supper until 8:00 PM?”

I run that risk because if I want to accomplish the dreams in my heart, I’ve got to be able to let someone help me. It’s scary and uncomfortable. But it’s not as bad as regret. I don’t want to lie on my death bed and regret I didn’t try to pursue the dreams God placed in my heart.

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Psalm 34

I know a woman who has to control every single little thing her in her life and the lives of others around her. When she isn’t able to, she gets extremely upset. She has a big heart, but she has no idea how much pain she is in or how offensive she is to others. There’s something inside of her that feels out of control. Whether it’s pain from her past, a bad memory, or some other fear, something keeps her hand in every pie. I feel sad for her because it’s also not in her nature to accept advice or direction from anyone else. That would mean giving up some control, wouldn’t it?

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If you struggle with control, I encourage you to give up one thing this week that you obsess on and have a difficult time letting go of. Maybe it’s how the dishwasher is loaded or how laundry is done. Maybe it’s a pet peeve. Letting go and letting God is liberating and freeing. Jesus came to make us free. Give Him what it is His in the first place and give peace a chance.

What will I give up this week? I’m going to give up an extra hour of study time and work very hard to be in the moment with my family.  I’ll let you know how it goes!

Share with me below what it is you will let go of. I’d love to celebrate with you!

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Atheist Dawkins: Aborting babies with Down Syndrome is the moral thing to do

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I can’t stop thinking about an article I wrote for Examiner a few days ago. As a Special Needs Kids Examiner and a college student working toward a degree in Special Education, I have access to the latest news regarding disabilities.

When I read about Richard Dawkins tweeting that children with Down Syndrome should be aborted, I was incensed. According to him, it is the moral thing to do because they have nothing to contribute.

Click to read the article I wrote.

But that’s the problem, isn’t it?

If one doesn’t believe in a God Who lovingly created humans in His Own Image, then life is nothing more than random cells. Humans are their own gods with the authority to decide who lives and dies.

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As I wrote in my new book, Autism, (Due out April 2015), I’ve met spiritual giants while working with people with disabilities. I think we’re going to be very surprised in Heaven when we meet our cognitively disabled brothers and sisters in their perfect bodies. Oh, what great conversations we’ll have then!

The following video chokes me up every single time I watch it. It says it all, I think. This life isn’t about being perfect (whatever that is because perfection is relative). Life is about love. And if you’ve ever known someone with Down Syndrome, you’ve known real, tangible love.

twitter51smallClick to tweet: Prenatal testing cannot predict love.

 

 

Make your way over to my Facebook page for a chance to win a $25 gift card from Amazon!

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Click to enter!

I love hearing from you. Do you know anyone with Down Syndrome? I’d love to hear all about them!

The most excellent back to school giveaway — win a $25 Amazon Gift Card!

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I love giveaways. I’ve won lots of things online and I think it’s great fun to offer them.

In honor of back to school, I’m giving away a $25 Amazon gift card!

All you have to do is click on the different ways to enter below, follow the directions and you’re entered!

Contest ends September 1. I’ll post the winner on September 2.

Have fun!

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Family vacation–an exercise in character building

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We were supposed to leave yesterday. Finally, about an hour ago, we squeezed ourselves into the car. All five of us. We’re going to travel 5100 miles.

Together.

In a car.

5100 miles.

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Now, mind you, we all have special needs. Two have autism, one has Alzheimer’s, one has ADD (my husband) and one is riddled with a genetic propensity toward anxiety. (I come from a long line of nervous people.)

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My husband has ADD. I don’t know if you’ve ever ridden in a car driven by someone with ADD.Straight lines are an abstraction. I don’t know how we don’t get pulled over for suspicion of intoxication. Why on earth would God pair a woman with anxiety issues with an ADD man? The only explanation I can think of is that He thinks it’s funny. Especially when my spouse hits those rumble strips on the side of the road when I’m in deep thought/sleep.

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Or when I look up from reading and we’re 2.5 inches from the back of a semi trailer.

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Not to mention the stuff he listens to on the radio.

Oh, Dear Heavenly Father, deliver me.

If it’s not the comedy station singing songs about racoons praising God in church, it’s barber shop quartets. I mean, I don’t mind for ten minutes or so. I love all types of music. But after eight hours I’m ready to strap myself to the top of the car. It’d be much more tolerable, I assure you.

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Mothers take vacations to rest from getting ready for vacations. I’ve done more laundry in the last week than I did all year. And I’m one of those people that has to clean the house before a trip. I mean, what if I die and don’t come back? I can’t leave this earth with people thinking I’m a slob.

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And then there are the dogs and cats. Who will take care of them? Even as I type this I have a knot in my stomach and a lump in my throat thinking about how much I’m going to miss them and how much they will miss me. I’m worried about the kittens going feral and the dogs’ hearts being broken. Two weeks is a long time to be away from one another!

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I did, of course, provide for someone to come in and interact with them each day, and to care for the house. My house won’t sit empty (so if you’re planning on robbing me, don’t try it. My dogs will eat you and my house sitters are armed and dangerous). But will those people cuddle the fur kids enough? I wish I had the money for a nanny cam! That way I could see them every day and make sure they aren’t being neglected. Unfortunately my house sitters don’t know how to use skype.

They’re low-tech folks with good aim.

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I did lose it once this morning when people were arguing over which flavor of Pop Tart to put in the trunk and which to put in the backseat. (Don’t worry, the gun was locked up at the time.) And I may have raised my voice a little when people ignored me about helping with chores. (Clean the house, people! Clean the house!)

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Now we’re finally on the road and I’m posting from inside the car. A first for me. I love my phone’s hotspot capabilities! (The bill, not so much.)

I need your help. I’ll be in the car with these characters for at least six to eight days. I need to know: how do you survive family vacations?

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Autism app: Chore Pad

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This week will be our first week to try Chore Pad to keep track of chores. I will post a review of this app next week.

The twins are 18, but they have developmental delays and need help staying on task. I’m terrible about charts that hang on the fridge. Our lives are so busy that they either get forgotten or fall off. But the twins love their iPads and iPhones and when I stumbled upon this app I was tickled. I introduced it to them today and they already enjoy navigating it and bringing it to me to see what they’ve accomplished.

Chorepad1Description from the iTunes app store:

“Chore Pad HD is a powerful, fun tool for motivating your kids to complete chores. Each child completes their assigned chores to earn stars which are redeemable for rewards that you create! Give bonus stars for a job well done or penalty stars to let your child know they should strive to do better.

Chore Pad HD’s beautiful artwork is fully optimized for the iPad Retina Display. Check out Chore Pad on the iPhone and iPod touch for the same great features in a smaller form factor.”

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It has won the following rewards:

Featured by Apple in *Education > New & Noteworthy* in over 20 countries.

148Apps Best App Ever Award
2012 – Won 1st Place in Parenting Category
2011 – Won 2nd Place in Parenting Category
2011 – Received an Honorable Mention in Teaching Category

GeekMom.com
“Chore Pad HD is fantastic for helping organize the family chores around the house.”

AppsForHomeSchooling.com
5 star rating and Golden App Award

A4CWSN.COM
Feature in top 100 favorite apps for 2011

CBS-MONEY WATCH
Money and Kids: Teaching Kids to Earn Money

iPhone Life Magazine
Top pick for most used app by Leigh Shulman, September/October 2011 issue

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Other important info:

NO-HASSLE SYNCING
Use a free Dropbox account to sync your data between all of your Chore Pad installations. Syncing happens automatically whenever you open or close Chore Pad, so keeping up to date with changes is effortless.

ENGAGING USER CARDS
Each child has their own card showing their star and checkmark totals under their portrait. Tap a child’s card to show their Chore Chart, where chores are completed to earn stars. Give out bonus stars to acknowledge a job well done or penalty stars to show more effort may be needed. Flip cards over to show stats for today, this week, last week or two weeks ago.

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SECURE PARENT MODE
Parent Mode keeps Chore Pad kid-friendly by tucking the important setup features safely away. Use Parent Mode to configure users, chores, rewards, syncing, passcode protection and more!

MOTIVATING REWARDS
Your child earns stars as chores are completed, and uses those stars to redeem rewards that you’ve created! Watch happily as your child learns to save up their stars for long-term goals!

TROPHY COLLECTION
Completing chores unlocks trophies over time, which are displayed on each child’s card and in their Chore Chart. A trophy shelf for each child displays their earned trophies!

BEAUTIFUL THEMES
Each child can select their own theme for their Chore Chart, with nine currently available and more to come!

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POWERFUL CUSTOMIZATION
Create template chores that can be copied to any number of children and customized individually for each. Specify a wide range of repeat intervals, star values and select from dozens of available chore icons.

From the Developers:

We’re here to help! Please don’t hesitate to contact us with any questions, comments or suggestions.

Support Email: support@nannek.com
Twitter: @chorepad
Facebook: http://www.facebook.com/ChorePad
Website: http://www.nannek.com

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 What do you use to keep track of your child’s chores? How much do you pay per chore? I am paying .50 per star. Is that too much or too little (keeping in mind developmental delays). I’d love your input!

 

When parents of disabled children kill

Autism-Awareness

I hear it all the time.

A parent gets overwhelmed and they kill their child with a disability because one more day is just too much.

Kelli Stapleton, age 45 of Michigan, wrote on her blog, The Status Woe, in September:  “I have to admit that I’m suffering from a severe case of battle fatigue.”

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It was on this blog that she vented about the challenges of raising her 14-year-old daughter, Isabelle, who has a diagnosis of autism and a history of violent outbursts. Something went wrong with her school program and it made things worse.

Why did something go wrong with the school program?

One of the reasons I want my degree in special education is because I have insight as a parent of special needs children.

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When will the schools realize that SAMENESS is one of the most important factors in educating students with autism? Especially severe autism? And especially severe autism in the teen years?

Later that day, this Mom and her daughter were found unconscious from carbon monoxide poisoning  in a van in which charcoal was burned with the windows all closed. The child survived and Mom is now in jail awaiting trial.

muchpainI’m not condoning her actions. But I understand what it’s like to lose hope. It’s the worst feeling in the world. You can’t think straight after being pummeled by your child day in and day out with no end in sight. There just isn’t enough support for parents in this country. We love our children. We love having them with us in our home. But where is the support?

School is not enough.

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Kelli’s friends are blogging for her now on her blog, and raising money for her legal fees.

Kelli’s Blog: The Status Woe

Fund Raiser: Friends of Kelli Stapleton

And a beautiful blog post about this situation is here: A Line in the Sand. It says so well all that I wanted to say here but couldn’t find the words as my heart breaks for this child and her mother.

Please read it. Even if you have no interest in special needs families. Read it and learn. There are hurting people out there and you just might be an answer to their prayer.

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