Archive for the ‘Family Support’ Topic

Advocacy Training – A transformative experience for parents of special needs children

Saturday, June 25th, 2011

Advocacy is good for our kids, but many of didn’t realize that it is good for parents, too. A new study completed by doctoral student Michelle Reynolds for the University of Missouri cites that parents who take advocacy courses become stronger and more confident advocates for their children with disabilities. Among the main benefits of advocacy for parents are:

A decrease in intimidation. Confident advocates felt less likely to be afraid to express their options and disagree when dealing with medical and educational staff.

Hopefulness about the future. Parents learn how to navigate the maze of organizations, manage transitions and learn about success stories of children who have ‘made it’ in the real world.

A sense of community. Parents can also rely on each other, thus lessening the sense of isolation that many of us face.

More respect for our children. Sidelining the focus on ‘fixing’ our kids, we learn how to celebrate their individuality, while identifying and meeting their needs.

The increase in control, hopefulness and community help reduce the oft-mentioned symptoms of combat-fatigue which parents of children with disabilities encounter due to fear, worry, isolation and guilt. Advocacy training marks a transformative experience where parents obtain an increased sense of control and learn to feel better about themselves and about the future for their children. Read the full report here.

The Coffee Klatch – an oasis for parents of children with disabilities

Wednesday, May 4th, 2011

The Coffee Klatch  is the social networking version of  sharing a cup of coffee with a good friend.  Tailored to  parents of special needs children,  The Coffee Klatch doesn’t limit topics to one diagnosis, one advocacy issue or one type of ability.  Perhaps its very eclecticism is what makes The Coffee Klatch  so appealing to parents. After all, our kids typically don’t  have only  an autism diagnosis; they also have concomitant medical issues – from ADHD to Down’s Syndrome to epilepsy to Tourette’s Syndrome to Sensory Processing Disorders to many, many others. 

 The Coffee Klatch provides an  engaging and non-threatening community. Marianne Russo, creator and lead moderator of the Coffee Klatch, is highly sensitive to the fact that parents have different levels of advocacy training, differing views about disabilities, and different needs for information. All moderators are volunteers and are parents of children with special needs.

The Coffee Klatch offers  Tweetchats  four mornings  per week, and blog talk radio shows two nights per week.  Guests include award winning authors, expert psychiatrists, psychologists, physicians, advocates and internationally renowned children’s foundations.  Parents are encouraged to ask questions from these highly qualified professionals from the comfort of their own living rooms. Blogtalks are archived on The Coffee Klatch’s website in case parents miss a session. Some of the interviewees include:

  • Temple Grandin, renowned autism self-advocate
  • Dr. Susan Swedo, principal investigator and Chief of the Pediatrics & Developmental Neuroscience Branch at the National Institute of Mental Health
  • Dr. Allen Francis, former chair for the DSM-IV Task Force
  • Denis Goldberg, Special Education Advisor
  • Carol Kranowitz, author of the “The Out-of-Sync Child” and Joye Newman, founder of Kids Moving Company; Carol and Joye co-authored the bestselling “Growing an In-Sync Child”
  • Dr. Russell Barkley, ADHD expert and thought-leader
  • Wayne Lindholm, President of the Down’s Syndrome Foundation
  • Areva Martin, attorney and author of “The Everyday Advocate”
  • Dennis Debbault, the leading global voice in autism training for law enforcement and emergency responders
  • Amalia Starr, independent living coach
  • Dr. Valerie Hu, a Biochemistry and Molecular Biology Professor at George Washington University, providing ground-breaking research on autism sub-types
  • Doug Riggs of the Missouri Planning Council for Developmental Disabilities and advocate against unlawful restraint and seclusion.
  • John Elder Robison, autism self-advocate and author of “Look Me in the Eye”
  • Dr. Russell Hyken,  Child Psychologist and Educational Consultant

For more information, please visit The Coffee Klatch’s new website and a calendar of upcoming events at www.TheCoffeeKlatch.com(Note from Mae: I liked the site so much I begged Marianne to allow me to be a moderator.  I hope you can join us. I’d love to meet you on one of the chats someday!)

 

Autism and restoring a mom’s trust in public schools

Thursday, November 4th, 2010

I’m afraid to believe that my son’s 4th grade in his new school is going so well. Connor is in a gen ed class 93% of the time; he is making As and Bs (albeit with modified programs for reading and writing);  he even participated in an after-school creative writing class with 12 other students without his para.  His teachers are great, and they understand that despite his language delays, he is a very bright little boy who can handle high expectations if given the chance.  The kids at the school are also wonderful, and Connor has made three new friends. The administrators and the special ed team are outstanding.  I take Connor to school, so I don’t worry about bullying on the bus (if there would be any – this seems to be a very nice bunch of kids, perhaps due in part to the school administrators’ emphasis on character education and  zero tolerance for bullying).

So what am I so $%@! afraid of? 

 The simple answer is that I’m afraid to trust that everything really is going so well. So I find myself over-reacting to the tiniest things – Connor got a D on his math test  yesterday (Is he falling behind?); Connor had a tantrum at the end of the school day (Oh no! That hasn’t happened in ages–do we need to bring in a specialist?  Are the other kids being mean to him? Will the teachers label him as a trouble-maker?).  And then, I find myself emailing the teacher and resource manager every day and googling every single person in the school to check up on their qualifications and to  make sure they don’t  have a criminal record.

Honestly, I’m wound so tight that  I could give a woodpecker a headache. Even I am embarrassed by my behavior.

I can’t say my fears are completely unwarranted. When my child was strapped into a chair in pres-school or when he was left languishing in 100 degree heat during  ’special ed’ summer school or when his his present level of performance was deliberately understated to keep him under the Phase II label (even though he was never in a Phase II classroom)…it put a scar on my very soul…and goodness only knows what harm it did to my son. So, I kinda feel  justified for being  so hyper-vigilant …especially since almost all of our issues occurred with the people who were supposed to be helping him – his special education team!

So, I am forcing myself to let up a little, to see what happens this year, and above all, to learn to trust in the much-maligned, but more-often-heroic public school system.  It takes time  and effort to let go of that suspicion, distrust and unhealthy paranoia. But I’m working on it, and am taking a little bit of time to work on me.   Maybe I’ll even get a new haircut, start exercising,  and reach out to old friends..wouldn’t that be something different!

For grandparents, neighbors and extended family…How can you help? Bring dinner!

Saturday, October 17th, 2009

My parents recently confessed that that they always wanted to help out with our son, but weren’t sure what to do.  They felt particularly helpless during the early years when Connor was newly diagnosed and we were still trying to find our way with Autism.  They are not alone. Many parents, neighbors and friends stand on the sidelines or walk on eggshells fearing that they will say or do the wrong thing.   If only these parents and friends knew how much we needed them during that difficult time (and how much we still need them now).  Maybe this  list of DO’s and DON’Ts will give them the guidelines and the confidence to step forward:

DO: Ask questions.  We won’t be offended.  We’d like to share what we know, and we’re just like any other parent — we want to brag about our children’s victories and commiserate about their setbacks.   If you don’t ask questions, chances are that we’ll assume that you either a) think we are overreacting and that our kids will ‘grow out of autism’ b) you don’t care or c) you think we aren’t doing enough to help our children (see below).

DON’T:  Judge.  Believe me, we question ourselves every step of the way.  Why did I do this?  Why didn’t I do that? What could I do better?  This mantra gets me through at least 100 sit-ups.

DO: Be respectful of our time.  Go see so-and-so and you need to read this  are typically not helpful unless they come from another mom or dad with a child on the spectrum or a professional, like an educator, doctor or attorney.  First of all, we probably have already read most of the generic literature, news and advice on autism. Secondly, you might’ve just sent us off on a wild goose chase to bond with someone we don’t care to know. I once spent three hours of time I didn’t have tracking down a therapist suggested by a well-meaning family member only to find out the ’therapist’ went out of business two years before.

DON’T: Under-estimate our children. Ever.  Or we will inflict bodily harm get really, really angry.

DO: Help us be vigilant.  Our kids can run faster than jackrabbits when eloping from sensory overload. Help us keep them safe from dashing into traffic, wandering away from home, falling into unsupervised swimming pools or talking to strangers.  Maybe then, we could trust you to watch them for just a little while while we grab a quick nap. (You wonder why we often won’t let our kids out of our sight…let me tell you, after finding my child tied to a chair during a mom’s day out program or witnessing his first seizure…well, I’m sure you get the picture.  Bear with us).

DO: Bring dinner!  It would be worth a call first to check and see if there are any dietary restrictions, but PLEASE bring dinner.  Just ring the doorbell and drop it off on the front porch with a nice note, kind of like those lovely church ladies do when someone gets back from the hospital.  The all-hands-on-deck time from 4:30 in the afternoon to bedtime is chaos.  Overly-tired children, cranky husbands, dogs that need walking and telemarketing calls from vendors who don’t check the do-not-call-lists make dinner time more like disaster time. So, please drop off dinner, send an encouraging email, or offer to run a few errands for us–and you’ll help more than you know!

The Value of a Parent Mentoring Chain

Friday, September 4th, 2009

Okay, I admit it.  My normally sunny, positive disposition occasionally suffers (spirals?) into an abyss of self-doubt, despair and worry.  When I get that way,  I have a gift I can rely on time and time again… I’ve learned the value of a parent mentoring chain. (more…)

Stuff that works - for us

We  don’t assume these products will work for everyone–that’s why we ended the title with the parenthetical (for us). But if you are looking for new things to try, please read the accompanying blogs to view our experiences with these products. 

Mama, Don’t Cry for Me a song written by Mandy Harker and Sharee Wolfley and Sung by Kalii Palmer. Listen when you really, really need the strength to keep believing that everything will be okay.

 Model Me Kids

Model Me Kids® has broken the code on tools to teach social skills to children on the autism spectrum.

Click here for our success story and a full product review.

 

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L. Mae Wilkinson:

National Examiner for Autism and Education

National Public Policy Examiner

St. Louis Examiner for Autism and Parenting

Co-moderator, The Coffee Klatch blog talk radio and tweetchat 

Reporter,  Autism Hangout 

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Twitter, AutismisnotBoss