Posts Tagged ‘Advocacy’

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.

Autism Ups and Downs: When Parents Lose Their Way

Monday, September 20th, 2010

Losing our way as parents happens.  Typically, it begins with the nagging doubt  that we aren’t doing something quite right, but we cannot  for the life of us figure out what it is. Sometimes the realization is a false alarm generated by other stressors in our lives.  Other times, the doubt is based in reality, but the underlying issue is easily identified and corrected by advice from other parents,  professionals or the ever-helpful Google search engine.

But other times, we parents do come to a point where we don’t know what to do, and all of the advice, research and theory just won’t cut it.   We need hands-on training.

That’s where Steve and I are now, and that’s when I know it’s time to call in the in-home parent trainer.

I do not like in-home parent trainers. I don’t dislike them; they just scare me with their common sense and practicality.  In fact, it’s always been my experience that our parent training is similar to the “Nanny” TV shows (except there aren’t any cameras, thank goodness). In those programs, the trainer patiently and quietly observes the family as they go through their day-today routines. The trainer then comes back  to reveal parenting errors that were obvious to everyone watching, except the oblivious parents. 

We know, we’ve been clueless parents, too.  Some suggestions that we’ve fielded from our trainers are:  ”Connor might walk better if you’d let his feet hit the ground once in awhile.” (We were carrying him too much) or “So what do you think he’s feeling right now?” (Reinforcing the idea that Connor has the right to provide input into his own care and treatment options).

So as painful as it can be, in-home parent education is well worth the time, trouble and less-than-flattering view of ourselves as parents.  But I dread it, even as nice as the trainers are, and even though the cost is covered by the State.

But wouldn’t it be even nicer if we had access to parent training on a continuous basis?  I, for one, believe that the Parents as Teachers/First Steps parent education we enjoyed when Connor was an infant should extend through at least middle school.    In Missouri, the Parents as Teachers training program ends when the child begins pre-school.  The trainers, usually ex-teachers who prefer to work part-time, show up at the parent’s doorstep every month or so to check on the child’s  progress and to give parents useful and fun activities to assist his/her development. Now that Connor is 9, and is officially in the ‘tween’ stage, we could use that help now.

New Year’s Resolutions for an ‘Autism Mom’

Thursday, December 31st, 2009

Autism and life are inextricable,  but certainly not incompatible nor joyless.  Sometimes, though, thriving with autism might take a bit more planning and commitment. Thus, with high hopes and good intentions, I join with many others in making my 2010 New Year’s resolutions. Here are mine, which have been tailored to an autism-friendly mode:

1. To stop dithering about my son’s educational placement, and get him where he needs and wants to be.  It all started with Connor’s statement, ”There are too many students and staff at my school.  I can’t concentrate.” All the sleepless nights, hand-wringing and relationship-cultivating efforts with the special education staff won’t change the fact that his current services and placement are not working as well as they could be. Dithering about the advantages and disadvantages of home school, private school or switching to a new public school is not helpful.  It’s time to get out those scorecards, interview guides, site tours and other due diligence methods that I used for years in the business world to discover what alternatives are out there, and how they may fit with Connor’s needs.  Surely there is some solution that incorporates inclusion, academic achievement, services  and a strength-based/individualized curriculum in an environment that my son will enjoy. (By the way, he’ll be in on the decision-making, too, along with our banker!)  Estimated completion date: June 1.

2. To talk less. This is a difficult thing to do.  I love words.  I love how words combine into phrases and phrases into sentences and sentences into paragraphs.  I even like to say the same thing twice, but in different ways.  Unfortunately, Connor doesn’t understand long monologues, and has even said “Mom, you talk too much.”  I’m sure my spouse would agree.  Estimated completion date: about 25 years from now.

3. To develop a passion for fresh fruit and lap swimming.  I thought these were more specific than “to adopt a healthier lifestyle.” The cholesterol-monster is already at work in my body, so diet and exercise are important for me, and fruit 3x per day and swimming 3x per week should be relatively easy to pull off. Besides, both can help my skin maintain a youthful glow, which at my age is much needed. Estimated completion date: ongoing, with constant vigilance and persistence.

4. To be willing to share what I’ve learned  and to keep learning. Mentoring and advocacy are critically important.  Moms and dads with autistic kids have a tank full of collective knowledge, and that knowledge is not siloed, even though the autism community that serves us is highly specialized.  In other words, we know how speech, OT, PT, APE, ABA, vision, music, art and other therapies fit into IEP goals. We know how concomitant medical issues may require the services of  a bunch of experts–an allergist, an  immunologist, a nutritionist, a gastroenterologist, an ear-nose-and-throat specialist, a sleep therapist, a pediatrician, a pharmacist, a psychologist, a neurologist, an attorney or even a social worker.  We’re pretty smart people, and I, for one, am glad to be part of such a group. Estimated completion date: always to be accessible for sharing; never to be finished with learning.

Happy New Year to you all!

Advocacy: What Can You Do in 30 Minutes?

Tuesday, April 21st, 2009

 Thankfully, organizations such as Autism Votes have made it easier than ever to advocate for legislation and policies helpful to families affected by autism.  If you think advocacy is time-consuming or scary,  check out what a mere 30 minutes can accomplish. It didn’t  take a long time for me to make a difference. You can do it, too!  (more…)

Quiet Advocacy

Wednesday, March 11th, 2009

As parents of children with autism, you are by definition, advocates.  Why not take your advocacy efforts further to help others?  Advocacy efforts don’t  have to be noisy and confrontational.  Communication and relationship-building seem to work much better for me anyhow. 

Schedule a meeting with school administrators to let them know how things are going and to share your ideas – they’ll love to hear from you.  Write a letter to your newspaper talking about what you think should be changed (like removing the R word) or why you think your child’s school district deserves a pat on the back. Schedule a meeting with your local legislators, and let them know how you feel about current policy related to people with autism, or just to tell your story.  You may not get to speak with Senator so-and-so or Governor whosit, but you will most certainly get to speak to someone on staff.  It’s true!  I always thought that I’d have to be a big-time lobbyist to speak with anyone in office, but that simply isn’t the case.  Some lobbyists have already worn out their welcome, so a real constituent is like a breath of fresh air. If you are too shy or too busy to meet in person, send an email or make a phone call.

Most of all, be there for other parents.  You’ve learned a lot, now share it with other parents who are just beginning their journey up Mt. Autism. You can sign up to be a parent mentor through a number of different organizations.  Call your state’s Department of Mental Health or ARC to see how you can help.  Or simply go to your  childrens’ parent-teacher organization meetings.  Supporting your child’s school is  a great way to meet new people and to gently make them aware of the sensitivities related to autism spectrum disorders.

And, if you have something you’d like to say, send your comments my way, and I’ll do my best to post them.

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

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