Posts Tagged ‘Education’

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 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!

Valentines, signatures and advice for the pincer-grip challenged

Tuesday, March 3rd, 2009

When it came time to write Valentines in kindergarten, Connor couldn’t write his classmates’ names small enough to fit on those teensie-tiny little cards. For those who are similarly pincer grip and fine-motor challenged, my husband came up with the perfect solution. First, he had Connor write every one of his classmates’ first and last names and his own signature on a single piece of paper. Then, I took the paper of his classmates’ names, scanned it and then resized the image so that it was roughly 1/3 of its original size. I scanned his signature, resized the image and then replicated it 23 times for each Valentine.

Connor then cut out each name and one copy of his signature. Then, he glued it to the Valentines. Unfortunately, Carter was not happy with the result. The glue was messy and the glue stick was ineffective on the slick-faced card stock. Carter came up with the idea to tape the names, which he did with a little help from us.

Mission accomplished. It might sound a bit laborious, but we as a team were able to deliver handwritten, hand-signed Valentines that met his teacher’s (and much more difficult, my son’s) expectations.  The pincer grip came about six months later!

A bad day doesn’t stop us from going to school

Tuesday, March 3rd, 2009

One morning no matter how hard I tried, my son would not put a shoe or a sock on his right foot. After an hour of wailing, meltdowns, time outs, bribes and begging, I gave up. I decided to walk to school per our usual routine, albeit with my five-year old partially barefoot. Undaunted, I led the procession with broom in hand to sweep away bits of broken glass, splinters or bird droppings that could be dangerous to his naked toes. Keep in mind that my son wanted to go to school so badly that he was willing to walk in with one shoe. Although I felt ridiculous, and I’m sure he did, too, I was quite proud of both of us.

As we entered the school, the principal and the social worker saw us, so I explained that no, I wasn’t trying to punish or humiliate my son by making him walk to school with only one shoe on; it was simply the only way I could get him to go to school. When we reached his classroom, his teacher told me I’d have to go back to the school office and sign him in because she had already listed him as absent. Back we went.

When I got to the office, the school administrator told me I’d have to fill out a special form to explain my son’s tardiness. By this time, I had had it, “Look, I’ve just had a one and half hour meltdown with my child. He is only wearing one shoe today and he can’t me tell why; I don’t know if his shoes are too little, or if he has an ingrown toenail, or if he is just being difficult. He’s only ten minutes tardy, he wanted to go straight to class, and the principal said for me to go ahead and escort him to the classroom, and then the teacher sent us back here.” Thankfully, she said she’d take care of it. She must have been an imperfect mom, too.

I immediately went to the store to buy five pairs of shoes. Surely something would fit him and appeal to his fashion sense. I prayed that they would not be perceived as ‘too fancy.’ I also talked the school social worker into putting in a word on our behalf with the kindergarten teacher, who was supremely miffed that I’d enter her classroom unannounced and ten minutes late with a one-shoed child. Finally, I called the school nurse to check out my son to see if one of his toes might be infected or broken. Of course, I was also twenty minutes late with my call to one of the partners of my consulting firm.

Sometimes you just have to do whatever it takes for yourself and for your child, including suspending the rule of consistency and discipline. I think both mom and child need to be cut some slack occasionally.

I’m sure you have at least a million stories like mine, so knowing that there are other moms capable of incredibly difficult, stupid or downright confusing moments. Keep smiling, and do remember to give your child (and his rapidly growing little feet) the benefit of the doubt.

IEP Serenity Wish

Saturday, February 28th, 2009

May the great IEP wizard grant me:

The strength to help my son change what can be changed through a combination of effective and thoughtful programs, teachers, therapists and compensatory strategies.

The courage to ignore those behavioral issues that drive me crazy, but will likely disappear on their own and/or didn’t matter in the first place.

The wisdom to know the difference so that I don’t drive my son crazy, thereby increasing my chances that he  might actually come to visit me in the nursing home (preferably accompanied by at least one grandchild) during my sunset years.

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.

 

Do You Have a Product?

Do you have a product you’d like us to review for Stuff That Works™? Contact us today.

 

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 

Facebook Mae Wilkinson

Twitter, AutismisnotBoss