Monday, December 30, 2013

Individualized IEPs: What Does it Take?

Individualized IEPs: What Does it Take?
Wondering if your child's IEP is really specific to his unique needs?
When you answer the questions on this IEP Checklist, you will know if your child's IEP is individualized, as the law requires.



Who's on the Team?
Schools must do all they can to ensure that parents participate in the IEP process.
You know your child so very well and the school needs to know your insights and concerns. Here's how to Add Parent Input to the IEP.

Services in the IEP: Specific & Individualized
Your child's IEP must include specific information about the services he will receive.
Download the Model IEP Form from the US Department of Education that requires the projected beginning date, frequency, location, and duration of services.


If you would like more information about IEPs, please contact us at Family Matters.  Our phone number is 866-436-7842.  We provide workshops and trainings on IEPs.  We also can review records and help parents analyze IEP goals to ensure that they are measurable, appropriate and realistic.

Wednesday, December 18, 2013

Some holiday links

The last month or so, I have come across some great, helpful resources about special needs and the holidays.  I thought I would highlight a few here in case anyone is interested in checking these posts out.

Christmas gift list:



At Four Plus an Angel, Ashlynn, a teen with autism, shares great gift suggestions for kids with autism. 


Holiday Sensory Challenges



The holidays are filled with fun, excitement, and sensory challenges for kids and adults alike.  Read this article for information about holiday sensory challenges and ways to help kids.



SPD Hanukkah



Check out this wonderful article about Hanukkah and Sensory Processing Disorder.

Holiday Humor


12 Days of Christmas SPD style

Twas the Night before an SPD Christmas


Autism Tips

This post has some great tips for parents of kids with autism on how to survive the holidays. 


A simple Christmas Request

Read this heartwarming post by a mom of a special needs kid.

Monday, December 9, 2013

Advocacy achieved through awful pop music

written by Lexi at Mostly True Stuff

“I’m sorry you have to see this,” I said to Lance as I connected my iPhone to the cassette player in my car (it’s hipster to use both a cassette tape and an iphone for music) and turned the volume way up.  What blasted through the stereo was a Katy Perry song that I’m ashamed to say I own, but was SO fitting, and SO terrible all at once. Have you heard her “Roar” song? It’s quite possibly the worst written song ever. BUT, it’s fantastic “music” to pump yourself up to before you go into a fight.
Except, this wasn’t a fight. It was an IEP meeting. I prepare for these meetings like athletes prepare for the big game, which includes a pre-game warm up. I sang the words on the top of my lungs and punch danced as we wound through the streets of our town while  Lance seemed to focus on actively repressing what he was witnessing.

I have a hard time with confrontation. I’ve used the word “fight” to about the work I do to make sure my kids get the services necessary to be successful in school. It’s not a fight. It’s advocacy, and there’s a big difference. My pre-game routine isn’t to get me to a place where I can yell, scream and demand at these meetings. It’s to get me in the mode to advocate, even when it’s hard. Even when it makes everyone in the room really uncomfortable because I will not bend as far as they are asking me to.  For me, standing up for myself and my children is equivalent to win in any sport; TKO in a fight.

To read the rest of the story, go to Mostly True Stuff

Monday, December 2, 2013

The Sensory Child Gets Organized Giveaway!

UPDATE:  If you are entering the giveaway, please make sure and include your email address so we can contact you if you win!





A couple years ago, I learned about Executive Function skills when I was trying to figure out how to help my son with school.  His teachers complained that he had trouble focusing, remembering to turn assignments in, and keeping his papers and materials organized.  According to WebMD:
Executive function refers to a set of mental skills that are coordinated in the brain's frontal lobe. Executive functions work together to help a person achieve goals.  Executive function includes the ability to:    

  • manage time and attention
  • switch focus
  • plan and organize
  • remember details
  • curb inappropriate speech or behavior
  • integrate past experience with present action

  • Kids with learning disorders, ADHD, autism (like my son) and other disorders often have executive functioning issues. 

    It was a relief to have a name and a reason for his focus issues, but I still didn't know exactly how to help him, which is why I jumped at the chance to read The Sensory Child Gets Organized by Carolyn Dalgliesh.  The subtitle sums up what this book is all about:  "Proven Systems for Rigid, Anxious, or Distracted Kids."

    The books starts off with some really good general information about sensory issues and how they are related to distractibility and organization.  Dalgliesh then goes on to help you answer the question, "How does your child learn best?" complete with a learning style survey and concrete ways to support each learning style.

    Dalgliesh has named her system Sensory Organizing and she explains that the system "focuses on helping you identify the most prevalent challenges or behaviors you are seeing in your child right now, and teaches you how to tap into structure, routines, visual aids and organizing toold to change behavior and put your child in a position to succeed."

    This book includes chapters on the Fundamentals of Sensory Spaces, storage systems, transitions, taking trips, and even information on social situations.

    This book is a must-have for any parent of a kid who struggles with organization.  Heck, it's a must-have for parents who struggle with it themselves.  I originally read this book with Danny, my autistic son, in mind, but I quickly realized that this system will not only help my other two children, but it could revolutionize my life.  Believe me, I need the help!

    I highly recommend you check out The Sensory Child Gets by Carolyn Dalgliesh!

    And we have one copy of the book to give away to a lucky reader.  Check out how to enter the giveaway below:


    How to Enter the Giveaway!

    ~~Leave a comment on this blog post for one entry.
    ~~Share the blog on Facebook or Twitter for another entry. (Please mention this in the comments so I know you have shared the post!)
    ~~Like our Facebook page (again, leave a comment telling me you have liked us).  https://www.facebook.com/FamilyMattersPTIC

    The deadline for entries is December 7th at midnight. 

    Wednesday, November 20, 2013

    Understanding

    written by Lexi at Mostly True Stuff

    Imagine your child has a pet. A pet they’ve had for years and are deeply attached to. Now imagine your child losing that pet. What would happen? Wailing? Gnashing of teeth? Would the loss of such a pet mean that the child couldn’t, understandably, even make it through a school day because of their insurmountable sadness?  

    Now imagine that happening every day. Sometimes twice a day. This is what happens with Casey’s Angry Birds plush toys. He’s obsessed. He usually has one that is the focus of his entire being, but if he’s home, he’s you can find him surrounded by at least three or four of them. The minute one goes missing-and it happens all of the time-Casey’s black and white thinking won’t allow for calm. The bird is gone forever.  He can’t think clearly to retrace his steps to find where he carried it off to. In his rage, he usually blames Abby. Abby’s not always innocent. She enjoys trucking those birds around, too.  Lance and I spend a great deal of time searching for Angry Birds.

    That’s what the last two days have been. Casey lost his Bomb Bird, pictured here in better times (he’s the black one):
    angry  frustrating damn birds
    He also lost the “Boomerang” bird, but that wasn’t the focus of his sorrow this time. The loss of the bird mirrored the sorry of losing a beloved family pet.  He wailed. Deep, heartbreaking sobs. We assured him that we’d find it, but it wasn’t enough to settle him down. I heard him up talking several times during the night, and he was up for the day at 4:45.

    The morning went fine, but by noon, I got a call from the school saying that Casey was too sick to stay. We’ve had colds running through the house, so I imagined one was coming on when I went to get him. He seemed so out of it. As I was talking to his para, he slumped down on the floor and leaned his head against the window. I watched as he stared off into the distance. He was still. Casey’s never still.
    - See more at Mostly True Stuff

    Tuesday, November 12, 2013

    Hey EVERY SCHOOL DISTRICT, here’s how you IEP…

    written by Lexi at Mostly True Stuff


    I’m pretty sure the Devil had his hand in the inspiration of having my kids’ Individualized Education Program (IEP) meetings just five days apart. It’s the only way in which I could explain it. In so doing, it made it REALLY EASY to compare and contrast what works and what doesn’t work.  Abby’s IEP did. not. work. I wrote about it last week.

    Casey’s IEP? Totally worked. So, here for you educators, you district representatives, you therapists…how to make an IEP that works.

    Surprisingly enough…most of this you can find in the Individuals with Disabilities Education Act (IDEA), but whatever. That’s in tricky legalese, which is the native tongue of Satan himself.  It’s also not laid out in an easy to read list.
    1. Work with the parents on IEP goals before the actual meeting. If the child is coming from out of district or if an IEP needs to be changed at all, talk to the parents about why those changes should be made and have the data to prove it.
    2. Find a time for the IEP that works for everyone and give at least a week’s notice. The notice should be in writing and should include everyone that will be at the meeting.  At this time, be sure to give the parent a copy of the Procedural Safeguards and explain to the parent exactly what those are.
    3. Make sure the parent has a copy of each team member’s contact information.
    4. Give the parent a copy of draft version of the IEP a couple of days (at least) before the meeting so the parent can have time to go over it, compare it to the former IEP, and note any questions or concerns.
    - See more at: Mostly True Stuff

    Wednesday, November 6, 2013

    "Exploring Feelings: Cognitive Behaviour Therapy to Manage ANGER" review and giveaway!


    Kids with autism often have difficulty appropriately expressing and understanding their emotions.  This is definitely true of Danny.  Whenever he is feeling a strong emotion, no matter if it's good or bad, it seems to impair his ability to communicate.  This is an especially big problem when he's angry.  So, when Future Horizons offered me the chance to review "Exploring Feelings: Cognitive Behaviour Therapy to Manage ANGER" by Tony Atwood I was excited.

    This is a workbook and program to help kids with Asperger's, High Functioning Autism, or PDD-NOS learn to deal with their feelings, most specifically anger.  Atwood collected a series of 6 sessions which can be used with groups or individuals. The sessions are very thorough, and each session builds on the previous one.   Atwood helps kids understand what makes them angry, how their body responds to anger, and how to effectively and appropriately deal with the anger when it comes.

    I'm really excited about this program because it seems super easy to adapt it to a family group activity so Danny doesn't feel like it's just more homework.  There is also much attention paid to developing tools to deal with strong emotions, like anger.  

    I especially like the lesson where Atwood has kids think of a TV, book or film hero who has felt angry.  He asks them questions like:  Why did he/she feel angry?  How did they cope with the feeling?  What did they do or think that stopped the feeling from becoming too strong?

    We haven't tried implementing these lessons yet, but my plan is to try them out this Christmas vacation, when we have some more free time.  If you're concerned about how your child deals with anger or other strong emotions, I would recommend checking out this book.  The way the lessons are set up really get the kids thinking about their feelings and how to control them, and it's all done in an interesting way.  I am so excited about this book!


    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    If you are buying this book from Future Horizons (which I highly recommend), you can get 15% off and free shipping if you use the code PH.  Remember, the 15% off applies on anything you purchase there, no matter how much you spend.  It's a great deal!


    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    To enter the giveaway just leave a comment here or on our facebook page telling me why you'd like a copy of the book.

    This giveaway is only for residents of the US and will end on Wednesday, November 13 at midnight.

    Tuesday, November 5, 2013

    Manning up




    Last night at the pool, some kids were picking on Danny. I don't think Danny even realized they were being mean to him, but I couldn't ignore it.  It wasn't too big of a deal; I confronted the kids in an appropriate manner and it ended.



    Though it was minor, this incident has been nagging at me for the last 24 hours.  I can't stop thinking about the little jerks who teased Danny; I have written letters to their mothers in my head, I've gone over the interaction, changing my words so that those kids would miraculously understand, and like, my son.  I stopped myself at least a dozen times from posting something about the incident on Facebook; as much as I craved the validation, I knew I should let it go.
       




    But, I can't seem to, because it's not just this one incident.; there have been others, including some involving the same kid. Also, I can't stop thinking about the future;  I've been consumed by thoughts about what lies in store for my almost nine-year-old son.  Danny's autism makes him very vulnerable.  He doesn't always realize when someone is being mean to him.  





    I worry that he'll be bullied.  I worry people will be mean to him; I'm terrified he'll be rejected and heartbroken by his peers.  





    I'm sure you all know exactly the kind of worry I am talking about here.
      


    No matter what I do, I just cannot seem to shake this anxiety; it has been eating away at me, coloring every interaction and relationship Danny has.





    This morning, as I tried to rouse my kid from his deep sleep, I had the urge to keep him home from camp.  Though the incident did not happen at camp, I wanted to keep him close.  I wanted to know that I was shielding him from whatever might happen out there in the big, scary world. 


    I know that protecting Danny from everything is not an option.  It's not even possible, and it's definitely not in his best interest.  I reminded myself of this and of the fact that Danny is tougher than he seems. But as I sat in his bed, looking at his peaceful face, I thought, I'm not cut out for this.  I can't handle it.  I cannot possibly deal with watching my son hurt or mocked or bullied.  I just can't do it.  How will I ever manage it?  It will break my heart.




     I sat there quietly crying, and that's when it hit me.





    This isn't about me.  This is about Danny.  




     Sure, it hurts me when Danny is picked on, but if I focus to the point of obsession on how it makes me feel, I won't be able to help him.




     It occurred to me that I should man up, that I need to develop a thicker skin, because when Danny does come home hurt, I cannot break down. I have to stay strong for his sake, for all three of my kids, actually.

    It doesn't matter how excruciatingly painful it is to watch my kids deal with challenges, I don't have the luxury of retreating to my bed and burying myself in escapism reading, though I have to admit I've been trying that method more than I should lately.  





    I have to stop my self-indulgent freak-outs (and if that means I need some medicine, so be it).  I have to figure out how to let go of the anger and the fear, or at least get it down to a manageable level.


    And I definitely have to quit obsessing over what might happen, because it's ruining the good moments.  





    Because you know what else happened last night at the pool?  Danny showed me that he has somehow miraculously taught himself how to doggy paddle--with no lessons or instructions.  This is the kid who still cannot tie his shoes,  the kid who took forever to learn how to pedal a bike.  





    Danny was so proud of himself, and I was proud, too, but instead of basking in the glory of such an amazing accomplishment, I let a couple of brats overshadow our excitement.  I let that one small incident consume me so that there was nothing left in my heart or brain to focus on how much fun we had.  I almost let those kids' actions ruin the entire night for me.

    I'll be damned if I give any small-minded bullies that kind of power again.

    Wednesday, October 30, 2013

    How Does Your Child's IEP Measure Up?



    Is your child’s evaluation data up to date and detailed enough to show his or her current levels in all academic, communication, emotional and functional living areas?
    Yes
    No
    Was the evaluation data used to then write the present levels of performance on the IEP?
    Yes
    No
    Were the Present Levels of Performance then used to develop goals and objectives for what your son or daughter needs to learn in the next year?
    Yes
    No
    Did you prepare a list of parental concerns and share it with the IEP team members prior to the meeting? Were they addressed and written in the Present Levels of Performance section of the IEP?
    Yes
    No
    Are each of the goals and objectives SMART?  (Specific, measurable, action based, realistic and relevant, and time limited)
    Yes
    No
    Do the goals and objectives represent progress from what was written for the previous year?
    Yes
    No
    Do you understand all the terminology used and the methods that will be used for teaching the skills?
    Yes
    No
    Is the curriculum that will be used based on scientific research and evidence that it is effective for students with the type of learning difficulties experienced by your child?
    Yes
    No
    Does the IEP show how progress will be monitored and reported to you and how often?
    Yes
    No
    Does the IEP show how much time your child will spend in general education, and in any needed therapy services?
    Yes
    No
     
    Is it clear to you how it will be determined that your child has met the goals and objectives?
    Yes
    No
    Does the IEP designate the person responsible for implementing each of the services that are listed and the IEP manager who will coordinate all the services?
    Yes
    No
    Did the IEP address whether any supports are needed for the classroom teacher in order to carry out the goals and objectives?
    Yes
    No
    Are any necessary accommodations or modifications to the curriculum, assignments, homework, or school rules listed in the IEP?
    Yes
    No
    Does the IEP tell how your child will participate in state and district-wide testing?
    Yes
    No
    If your child is age 14 and a half or older, does the IEP include a transition plan?
    Yes
    No
    Have you talked about grading accommodations and diploma options?
    Yes
    No

     

    If you would like help evaluating your child’s IEP, we provide free records reviews at Family Matters.  An information specialist can review the IEP and other records and determine whether any changes need to be made. An Information Specialist from our office can guide you through the process and help you prepare for your annual IEP meeting. Call Family  Matters at 866-436-7842 or send an email message to info@fmptic.org to schedule a time for a consultation.

     

    Tuesday, October 22, 2013

    The Role of an Independent Educational Evaluation in Matters of Inclusion

    originally posted on thinkinclusive.com

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    By Dr. Steve C. Imber
    Inclusion is not in the IDEA.

    Although the term ‘inclusion’ is not included within the Individuals with Disabilities Education Act (2004), inclusion has become a prominent strategy for educating children and youth with disabilities with non-disabled peers within a general education setting since the late 1980’s and 1990’s.

    The concept of mainstreaming connotes placing a student with disabilities in a general education setting within minimal modifications of objectives, instructional strategies, evaluation procedures and grading strategies. However, that concept will also not be found within the federal regulations pertaining to educating children with disabilities.The term ‘least restrictive environment’ can be found in various federal and state regulations that pertain to students with disabilities. In 1975, when the United States Congress passed landmark legislation, P.L. 94-142, The Education for All Handicapped Children Act in 1975, the term least restrictive environment was addressed. Congress expressed a strong preference for educating children with disabilities with their non-disabled peers.

    Congress mandated that Individualized Education Program (IEP) teams include the parents and professionals with knowledge about the child. Congress also mandated that prior to exploring matters of placement in more restrictive settings than a general education classroom, the IEP team must first consider how the child might be supported through the necessary aides and supports.

    To read more, click here.....

    Tuesday, October 15, 2013

    Just Take a Bite review



    The authors contradict the myths that most of us believe with regards to food.  It is the child's responsibility to eat; the parents' responsibility is to give them plenty of healthy options.

    One chapter outlines what children should be able to do at particular ages, what oral-motor skills they should be acquiring and how that affects feeding

    The authors also get into what environmental and behavioral factors might be contributing to the child's resistance to new foods.  For example, a child might suffer from Food Neophobia or the fear of new foods.  They then outline how parents may inadvertently be making the problem of food neophobia worse by doing things like never offering new foods.

    There are chapters on sensory and motor-based problems and how they may make eating difficult, as well. 

    Chapter 6 is all about designing and implementing a comprehensive treatment plan.  There is even a chapter devoted to the stages of sensory development for eating, which helps kids with sensory problems begin to try new foods.  Each stage exposes a child to the new food in non-threatening ways.  For example, in stage two the focus is touch, so the child is encouraged to play with and touch the food to get familiar with it.

    Don't make the dinner table a battleground.

    This book is available in our lending library for checkout for residents of Illinois.  We will mail it to you with a self-addressed, stamped envelope for easy return.

    You can also buy it at Future Horizons.

    Thursday, October 10, 2013

    Foot races and acceptance


    My heart sank.

    Danny insisted that I let him play outside, but that was the last thing I felt like doing.  We were visiting my mom, and her next door neighbors were having a party.  There was a gaggle of kids in the front yard playing with sidewalk chalk and laughing, and I worried that they would exclude Danny.  
    Or worse, that they would reject him.

    I just didn't want to face this group of kids.  I didn't want to watch them as they sized up Danny.  I couldn't stomach watching them laugh at him or roll their eyes at him.  More than anything, I wanted to convince Danny and Charlotte to go back in the house.  I just wasn't up for the possible hurt feelings.

    Danny was chomping at the bit  to get outside and play, though, and he couldn't figure out why I was stopping him.  Of course, I couldn't tell him that my fear was he'd be rejected by these kids.  Danny loves other kids, but often has difficulty interacting with them.  He doesn't understand many of the playground's inherent social rules, and because of that, kids sometimes think he's weird.  He's been called all kinds of names, even the dreaded R-word.

    Danny has friends, but they are mostly kids who have known him for a while--friends of the family.  His other friends are from LEGO Club, which is made up of kids who have a lot of the same social struggles as Danny.  Once others get to know him, they often discover how wonderfully funny and exuberant Danny is, but making new friends is where it's tough.  It takes people a while to understand him--his language isn't always decipherable, mostly because he almost always launches into a conversation with no background information for people.  He'll regale kids with the most arcane tidbits about LEGO Hero Factory, while his audience just stares, confused.

    So, I braced myself, preparing for the worst.

    Danny rode his bike up to the group of kids and announced his name and standing as a LEGO champ without ever making eye contact with anyone.  Then, he rode off.

    The kids laughed, and I flinched.  Here we go, I thought.

    As a tiny little girl approached me, I wondered how I could explain Danny to these kids in a way that would educate them and not sound like I was apologizing for my son.

    But, Samara didn't require an explanation.  She stopped in front of me, looked me in the eyes, smiled, and said, "Excuse me, can you tell your son that if he wants to play with us, he can?"

    The rest of the evening, Danny joined these energetic, but polite kids, running races up and down the block. They laughed and goofed around.  Danny made some of his trademark off-the-wall comments and the kids giggled.

    But they were not laughing at him.  They were not avoiding him.  They accepted my son into their little group of cousins and siblings with no question at all.  This group was made up of at least three different ethnicities and many different ages, and with the addition of  Danny, it was even  more diverse than before.

    No one batted an eye at Danny's idiosyncrasies.  No one worried that Danny was different.  They just played together, laughing, running, and making silly jokes.

    These sweet kids taught me an important lesson: not all kids are cruel. Obviously, there will be those who do not accept Danny, but tonight I learned that there are some incredible people out there, people who are welcoming, inviting and accepting of all different kinds of people.

    And those are the types of friends that Danny deserves.
     


    Patty is mom to three wonderful kids, all of whom have Sensory Processing Disorder.  Her oldest son is also on the autism spectrum.  She is a freelance reporter for her local newspaper and started a LEGO Social Club for kids on the spectrum last year.  She blogs at www.pancakesgoneawry.blogspot.com

    Tuesday, October 8, 2013

    "Somewhere Over the Sea" Giveaway


    We are giving away one copy of Somewhere Over the Sea by Halfdan W. Freihow to a lucky reader.  Read the review below, taken from Amazon:

    In this deeply moving and elegantly written book, Halfdan W. Freihow takes Gabriel, his young autistic son, on a journey through the full spectrum of human experience. With great love, profound tenderness, and gentle wit, Freihow captures Gabriel’s triumphs and disappointments, his joy and frustration, while struggling to help him make sense of a world that he himself does not, and cannot, fully comprehend. A powerful, honest, and achingly beautiful narrative, Somewhere Over the Sea describes a complex, loving relationship that is sometimes fraught with misunderstanding, but always bolstered by unconditional love. A must-read for all parents.


    GIVEAWAY!!!!

    There are a few different ways to enter the contest. You are able to get up to four entries per person!

    ~~One entry for leaving a comment here telling us why you would like a set of In-Sync Activity Cards

    ~~One entry for liking us on Facebook: http://www.facebook.com/#!/FamilyMattersPTIC?fref=ts
    Just click on that link and hit the 'Like' button.
      (Please mention in a comment on this post that you have liked our FB pageor else I won't know to give you an entry).

    ~~One entry for blogging about our giveaway. Share your link here in the comments.

    ~~One entry for sharing this post on Facebook. Share the link in the comments.

    ***Due to shipping expenses, this giveaway is only for residents of the US.

    Giveaway ends Monday, October 14th at midnight.



    Tuesday, October 1, 2013

    Sticks and Stones


    Last week some older boys called Danny a retard.

    It was devastating. At least it was for me. Danny was more angry that the kids were not letting him use the slide; the name calling didn't seem to faze him too much. Thankfully.

    But me? Well, I cried for more than an hour that afternoon.

    I know no one wants to see their kid made fun of, but there is something extraordinarily painful to me about Danny being mocked for his quirks. I can't quite articulate it. I guess it is just a fear of mine that he will not be able to make friends or that other kids will be mean to him because of his differences.

    I know this is a fear all moms have, but truly, this is different. Of course, I would never want Charlotte to be mocked, but I am pretty sure if she were called a retard, I would be able to brush it off much more easily and chalk it up to the stupidity of bullies.

    But Danny being called that word hits home. Not because he is slow mentally or because he is intellectually disabled in any way. Actually, he isn't at all. Academically, he is right on target for his age, and above average in some areas.

    Socially, though, Danny has some delays. Definitely. And he has quirks which can sometimes put others off. And having kids make fun of him for those differences makes me worry even more about Danny's future social life. I worry that he won't have friends and that he'll be lonely. And having some kid make fun of him for it just highlights that my fears aren't unthinkable.

    Fortunately, that afternoon as I cried, I did something very smart. I called my sister. I knew she would understand. She loves Danny as much as anyone could--she has always been his defender.

    She was as angry as I was, but then she gave me an amazing gift. She helped me not just see past it, but also how to turn this into a learning experience for Danny and Charlotte. And even for me.

    Beth urged me to not allow Danny to become the victim, but to teach him that those boys were wrong. Beth tells her kids that when kids are mean to them, they should say, "You are being mean to me. When you are mean, I can't play with you. Friends are not mean." After that, they are to walk away and play somewhere else.

    She advised me to point out to Char and Dan that those mean kids should never have said those things. The mean kids are the ones with the problem, and my kids should seek out friends who are nice. Friends, like A, who stuck up for Danny on the playground that day. In fact, A was the one who told me what had happened, and who actually told the mean kids' mom. A was so angry at what they had done to Danny that she couldn't let it rest.

    So, that evening, I talked with Charlotte and Danny. I explained that the big kids were being mean, that they were wrong and that we should never treat people that way. I also pointed out that A, on the other hand, was a really good friend, and that she was the kind of friend the kids should seek out.

    I don't know how much sank in with Danny. He didn't seem all that interested in the conversation. Still, it made me feel better. I know that this is just one of many times in which Danny will most probably be mocked for his differences. I also know that most kids get teased and have their feelings hurt many times throughout childhood. I know I sure did.

    But now, with my sister's help, I realized that I don't have to just sit here and bear it. Instead, I can use these moments to empower my children, to teach them right from wrong and how to be a good friend. And I can teach them that they don't have to put up with people being cruel to them. They are not victims, no matter how badly their feelings have been hurt. They have the power to walk away and choose to make different friends.

    Friends like A.

    And friends like my sister.

    Free Screening of "Bully"


     
    The end of bullying begins with me. 
     
    October is National Bullying Prevention month. 
     
    Family Matters, in collaboration with the Helen Matthes Library in Effingham, IL will be hosting a showing of the award winning film, “Bully”, by Lee Hirsch, on Tuesday, October 8th at 6:00 pm. at the library. 
     
    Following the film we will facilitate a discussion about how to respond to and prevent bullying in our community.  The film is rated PG-13.  “Bully” is a beautifully cinematic documentary following 5 kids and their families over the course of a school year and offering insight into the issues of America’s bullying crisis.  With an intimate and often shocking glimpse into homes, classrooms, cafeterias and principals’ offices, this is a powerful and inspiring film that every educator, parent and teenager should see.  To register, visit www.effinghamlibrary.org or you can call the library at 217-342-2464.  Please join us!

    If you or someone you know would like more information about bullying and Illinois law, please contact Family Matters at 866-43-7842!

    Exploring the Parent-Child Dynamic within the IEP Team

    originally posted at thinkinclusive.com

    Listen To Your Kids

    Think inclusive… about the IEP process and IEP team from the child’s perspective. Tim Villegas does an excellent job here gathering parental and professional insights on educating students with disabilities. Today I hope to add a new comprehensive layer by discussing the student viewpoint. Disclaimer, rather than providing you with answers my post aims to raise questions and stimulate dialogue.

    First though, perhaps I should make a proper introduction. I’m Zachary Fenell, an author and freelance writer who enjoys exploring different disability related issues. My interest in disabilities remains personal considering I was born with a mild case of cerebral palsy (CP). In my teen memoir Off Balanced (available on the Kindle and Nook) I share how my CP affected me socially as an adolescent.

    Additionally I write articles for The Mobility Resource, an organization with handicap van dealers across the United States. Plus I serve as the Guest Blog Coordinator for Handicap This Productions, a critically acclaimed group attentive on educating, entertaining, and empowering the world on disability orientated topics. Also worth noting I contributed articles to Special Education Guide, an informational website dedicated to covering all things special education.

    Anyways, now you know my credentials. Shall we get to the point? Reflect on how your son or daughter’s IEP team functions. When possible, does he or she contribute? Do the IEP team members respect the ideas and notions your child brings forward? More specifically, do you value your son or daughter’s input?  Answering this last question proves especially important, given in my personal experience the parent and child influence the IEP process the most.

    You see, in my situation my parents set the tone for our yearly IEP team meetings. My mother entered the room focused, ready to address her concerns with regards to the next school year. The other team members listened and the appropriate conversations proceeded. The discussions rarely if ever induced surprise from me because my parents talked to me about their concerns prior to the meetings. Still I did not always feel Mom and Dad seriously contemplated my feedback.

    Allow me to illustrate. In Off Balanced I document an argument I had with my parents when preparing to transition from upper elementary school to junior high school. Despite my mild CP, I can ascend and descend steps rather easily using a railing. Such the case, I wanted to use the stairs at school like everybody else. My parents maintained other ideas. Citing safety concerns, they pretty much told me I must take the elevator at school.

    To read more, click here.....

    Monday, September 30, 2013

    "Different.....Not Less" Review

     
    We'd had a particularly difficult week last month, one that included a meeting with my son's teachers. To say that I came away from that meeting discouraged and disheartened would be an understatement. Heartbroken comes much closer.

    An email from Future Horizons asking if I would like to review Temple Grandin's new book couldn't have come at a better time. The subtitle of Different, Not Less by Temple Grandin is apt: "Inspiring stories of achievement and successful employment from adults with Autism, Asperger's and ADHD."

    In the foreword, Dr. Tony Attwood makes this claim: "This book has antidepressant qualities to rival those of medication." And he's totally right!

    I sat there reading this book, inhaling it really, alternately smiling and crying, all the while feeling like there IS hope. There really, really is.

    Grandin has done an excellent job in selecting the stories to highlight in this book. She chose an incredibly varied group of adults with a wide range of experiences. The book includes accounts from a physician, a real estate agent, a mother, and professor among many others, all adults who have found their way in a world that is not always particularly accommodating to those whose brains are wired differently.

    And they don't sugar coat things. It is an honest assessment of the challenges and successes that they have had over the years from childhood on.

    I highly recommend Different, Not Less to anyone who has Asperger's, Autism, or ADHD or anyone who works with individuals that do. And I recommend it to anyone looking for some inspiration, because you are sure to find it.

     If you decide to buy this book at Future Horizons, use the promotional code PH when checking out, you'll get an additional 15% off and free shipping. Can't beat that, right?

    Also, we have a new copy of this book in our lending library here at Family Matters!  If you live in Illinois and would like to borrow this book, please contact us at 866-436-7842.  Or you can visit our website and request a copy yourself, here.http://www.fmptic.org/library 

    We provide a self-addressed, stamped envelope for easy return!  And you get the book for a month, for free!

    Thursday, September 26, 2013

    The Worry

    Recent conversation with friend:

    Me: I've been really worried about Danny making friends.

    Friend: I know what you mean. I worry about my kids and their friends, too.

    Me: But here's the thing: Danny doesn't actually have any friends.

    Friend: Sure he does! What about the kids at church?

    Me: Uh, no, they're not really his friends. He never talks about them and they aren't especially nice to him. I worry that the kids are making fun of him. I heard one kid say.....

    Friend: (interrupting) Yeah. All moms worry about that, right? I mean, just the other day, someone teased my daughter about a boy who likes her.

    Me: Hmmmm... yeah, but that's not really the same as being called a "retard" by classmates, is it?

    Friend: Well, I know what you mean. No one likes to hear their kid being teased.

    Me: (hitting head against wall) Yeah, well, I have to run. Thanks for talking (sarcastically).


    All mothers worry about their children's futures. We worry about drugs and school and bullying. We worry about their health and self-esteem, their future careers and romantic lives.

    When you have a kid with autism or any other special need, however, the worrying takes on epic proportions, mostly because these fears are so much more likely to come true than with NT kids. I don't care what a mom of neurotypical kids says; it is NOT the same thing.

    My son has high functioning autism, and I worry about his future to the point of obsession. Now, of course I worry about my younger daughter and son. I want them to be happy and successful adults, too, but with Danny, I'm really scared. Scared that he might turn to drugs to deal with his social struggles or in order to fit in. Scared he may someday battle depression because he is so different and -everything--everything!-- seems to be a bigger struggle for him.

    I'm terrified of the day when he realizes people look at him strangely. I worry he won't be able to hold a job or have a romantic relationship (if he wants one). Hell, I'm scared he won't ever have a truly good friend.

    I worry that someday all his struggles with sensory stimuli, learning and just daily living will prove to be too much for him, that he'll just want to give up on it all, because life is just so damn hard for him.

    And I worry that someday my daughter will realize that her brother is different and she won't want him around. That she'll be embarrassed of him and his differences.

    This worry I have for my son who has autism is fundamentally different than the worry I harbor for my younger kids. OF COURSE, I don't want any of them to be bullied, but in Danny's case, it's much more likely to happen. In fact, I've already witnessed episodes. Kids are cruel. We all know that, and many kids are the victims of bullying and teasing. I know I was. But, the thing about kids (and really, many adults) is that they are uncomfortable with people who are different. Kids who are different are very likely to get made fun of; it's the law of the playground.

    I want my other kids to go to college and get jobs, and sure, I know they could end up on welfare as easily as the next kid. But Danny? Danny who struggles with processing directions, who gets stressed so easily, who offends people sometimes by his bluntness? Yeah, SO much more likely to have problems in the workforce or even in interviews. And he is such a homebody, it isn't such a stretch to imagine him living in my basement, playing video games into his 40s.

    As parents we will always worry about our kids, but to say that the "normal" worry is the same as this is so insulting. It's like me telling a friend whose kid has some disease that we all worry about our kids' health, it's no big deal.

    I know I have to get a grip on these worries, and mostly I have. I work really hard to get Danny the help he needs to learn social skills, to succeed in school, to manage his stress. And I try not to think about the future too much, because when I do, it all seems so incredibly overwhelming and scary.

    And the last thing I need--any of us needs--is someone invalidating or minimizing those fears. Because as much as you try to gloss over them or make them seem less significant, they are still there. And they always will be.

    Tuesday, September 24, 2013

    Bittersweet

    The other night, I had an unusually long conversation with my son, Danny who has autism.  In all his 8 years, we have rarely had a lengthy talk, which has been a source of grief for me.  I have always wondered what he is feeling and thinking;  I want to understand where he is coming from so I can help him and so I can know him better.

    When Danny was a toddler, he didn't speak.  In fact, that was my first clue that something was different about him.  Sure, he babbled, but at 2, he still hadn't uttered a single word.  When he did expand his vocabulary, every word was a hard-earned achievement.  We practiced and modeled speech for Danny hours every single day.  I dreamed about the day that my son would be able to communicate with me.

    Now that he's older, Danny's speech is much more advanced, but still he rarely shares his feelings with me. He'll talk readily about certain subjects, like LEGO and Angry Birds, his two recent obsessions, but I don't often get much out of him about how his day was or how he's feeling.  And when he is experiencing a strong emotion, he has enormous difficulty communicating. He often gets tongue-tied or uses language inappropriately, which makes it almost impossible to decipher his meaning.  And he gets really annoyed if I grill him with too many questions.

    In recent months, we have been making some headway; he has been telling me how he feels about things and offering up information to me like so many bits of treasure.  One day, Danny excitedly shared that his teacher had made Bruno's cake from a story they had read in class.  Another day, he declared that he wanted to buy his teacher a Valentine's Day present and listed possible gift ideas (LEGO sets were at the top of the list).  In preparation for a field trip, Dan remembered to inform me that he needed to wear a red shirt.

    This breakthrough excites me so much, I can hardly stand it. I feel like I am getting a glimpse into a different side of my boy.  Like I am privy to some of his private thoughts.  All these years, I have been waiting for Danny to let me into his head a bit, to share his thoughts and feelings.  I have been imagining and daydreaming about what it would be like to understand my son better, to be allowed into his life more.  And it has been amazing.  I feel like I am bonding with him in a way that I never have before.  And this gives me hope for him and his ability to self-advocate.  I can tell he feels better too; he's less frustrated and seems proud when he can articulate his feelings.

    So, why, why am I fighting back tears?  Why are some of my conversations with him breaking my heart?  Because along with his joys, Danny has also been sharing his disappointments, his fears, his struggles.

    Often in the last few months, Danny has been coming home from school telling me how much he missed me all day long and that he hates being away from me that long.  Last week, Danny told me that he has no friends at school and that making friends is really, really hard.

    And just last night, we had that long conversation I mentioned.  Danny explained to me in halting terms why he hates school, how everyone talks too much, how it just overwhelms him and gives him headaches, and how he can't really understand what is expected of him.  And he topped it off with this: "Mom, I am just no good at listening to directions.  I'm terrible at it.  I try.  I try my best, but I'm bad at it, and it's all my fault!"

    All those times I wished and prayed that Danny could communicate better, I never considered that what he had to say would be very difficult to hear.  I always thought that I would be able to help him more if he could adequately express himself.  Somehow, mixed in with the immense pride at how hard he's worked and how far he's come, I also feel sadness.


    - - - - - - - - - - - - - - -

    Patty is a stay-at-home mom to three wonderful kids, all of whom have Sensory Processing Disorder.  Her oldest son is also on the autism spectrum.  She is a freelance writer and started a LEGO Social Club for kids on the spectrum last year.  She blogs at www.pancakesgoneawry.blogspot.com