One Kind Word Deserves Another

In the world of blogging, discussion and traffic let bloggers know that the time we spend sharing and helping others has value.

Bloggers love discussion in their comment section or email. We love referrals from others: links from other blogs and forums, Tweets, Facebook recommendations, LiveBinder listings...anywhere that brings traffic to our site.

Special needs bloggers tend to write because they want to help and support other families, teachers, and therapists paddling the same boat. There is just something extra-special about these good folks!

Knowing that traffic is a great way to encourage a blogger, will you join me in supporting some great bloggers by visiting their sites? These are the Top Ten Blogs that have referred the most visitors to Adapting Creatively. Some days it was the readers coming from these sites that encouraged me to keep posting.

These are some great sites by some talented and creative individuals. Some are parents, some are teachers, some are therapists. All deserve recognition. And you might just stumble across a new favorite!

1) http://livingwithrettsyndrome.blogspot.com/

2) http://howlongisthishall.blogspot.com/

3) http://gravity-check.blogspot.com/

4) http://samscooltoolsfortheclassroom.blogspot.com/

5) http://www.hopefulparents.org/

6) http://www.lifestwistedstitches.com/

7) http://smdteacher.blogspot.com/

8) http://therapyfunzone.com/blog/

9) http://www.therextras.com/

10) http://teachinglearnerswithmultipleneeds.blogspot.com/

(A quick little side note...there are a couple of lovely forums that directed lots of traffic and I would like to thank them as well. Many thanks to http://www.parent-2-parent.com/forums/forum.php and http://community.babycenter.com/! If you are looking to get involved in a forum, either of these are great resources!)

Thanks for taking a few minutes to check out one or two—or all ten!—of these inspiring blogs!

I hope you are enjoying a relaxing, healthy summer,

Rose-Marie

G-tube Resource RoundUp

Here you go! As promised, here is a list of resources to support families of kids with g-tubes. Of course, we could always use more! If you know of others, please add them in the comment section. I’ll keep the list updated so it’s easy for folks to bookmark them all in one spot. Thanks!!! I appreciate your help.

Rose-Marie

Organizations

The Oley Foundation (supports adult and child consumers)

A.S.P.E.N.  (professional support)

Feeding Tube Awareness (family support)

Listserves/Forums

            BabyCenter’s Babies and Children with Feeding Tubes forum            

            BlenderizedDiet.net forum            

            Yahoo Blenderized diet listserve           

            Yahoo Tube Feeding listserve

Blogs

            Adapting Creatively

            Ainsley Rae            

            You Start with a Tube

Clothing

            Tummy Tunnels            

            Special Clothes

Clothing Tutorials

            Grab-a-Scab at Adaptions 4 Kidz            

            G-tube Jammies            

            G-tube Clothing: Design            

            G-tube Clothing: Blank Canvas            

            G-tube Clothing: In-Seam Openings (to be posted soon)

Books and Informational Articles

            Homemade Blended Formula Handbook (Klein and Morris)

            Los Altos Feeding Clinic

            New Visions informational articles

            When Jeremy Jones’ Stomach Stopped Working: A story for children with g-tubes from mitoaction.org

Feeding Tube Awareness Week

Do you love someone with a feeding tube? Please join me in helping raise awareness of feeding tubes this week. Whether you are newly facing the decision about getting a feeding tube or a long-time tube-feeding "pro," there should be a lot to talk about.

All this week we'll be looking at issues related to tube feedings and sharing ideas for ways to simplify life with a tube. We'll share resources, strategies, concerns...it's going to be a great week!

To launch the activities, you might want to see some of the precious faces of some amazing kids that thrive through tube feedings. Thanks to the brave kids and parents at the Babies and Kids with Feeding Tubes at BabyCenter.com for sharing their photos and the great moms and dads at feedingtubeawareness.com for putting them into a video!

Here are some resource links to check out this week:


General links


The Oley Foundation: a national not-for-profit organization of over 9,900 members that supports individuals and families with tube-feeding needs. They send out a great bi-monthly newsletter, hold annual conferences, organize a supply swap, match families with mentors, and other helpful things.


Feeding Tube Awareness: a site to provide emotional and practical support to families of children using feeding tubes.


New Visions: a fabulous resource by a fabulous oral motor therapist, this site has a wealth of information on tube feeding. Check out Suzanne's excellent articles!


Lists/Forums


Sometimes nothing helps as much as a personal contact. Find just what you need here:


Babies and Children with a Feeding Tube: this community at BabyCenter.com is a hopping place! There are some very friendly and helpful parents here.


Tube Feeding Listserve at Yahoo: this well-established group has been supporting families and professionals for nearly nine years. I pass it along as a resource that some of my friends have participated in; I have never been on this list.


Blenderized Diet Listserve at Yahoo: for those ready to venture into creating blended g-tube formulas, come join us here!


Blogs


You Start with a Tube: a marvelous blog written by an adult with a g-tube, a wealth of knowledge, and a side-splitting sense of humor




What resources would you recommend? Got a blog to share? If so, please comment below. At the end of the week, I'll post the collection for easy sharing.

You’ve Got to See This: My Unique Child

Whether you are a parent or a professional looking for information specific to a diagnosis, you’ll find a wealth of information at My Unique Child. Let me share a little about the great things you will find there.  

First, My Unique Child is a very warm and reassuring place. The site is brought to you by Cheryl Scott, Licensed Mental Health Counselor, who also happens to be the mother of a child with special needs. She’s also a really nice person. When she invites your comments and questions, know that her invitation is sincere. The site is growing and changing and she would appreciate your input about what would best meet your needs.

You will find My Unique Child to be well-organized. You can locate the information you need easily.

The first section provides information on exceptionalities (the special challenges that our kids face) and diagnostic codesfor various disorders, which is something that parents need often for the mountains of medical paperwork. With ever-changing codes, it’s really nice to have an up-to-date source for this information.

The second section provides a nice assortment of videos related to specific challenges. Some provide information or first-hand insights about living with a particular disorder. Others offer ideas for therapy activities to help children learn and communicate.

You’ll find an ever-growing book list, from general disabilities information and coping to specific diagnoses.

Following the contact page tab, there is a page of helpful tools. These include free video tutorials and a list of recommended products to use with your child. All of them are tested and true.

I hope you will pop over to Cheryl’s My Unique Child site; you’ll be glad you did. Pull up a cup of coffee and settle in for a good browse. And while you’re there, please let her know what else you’d like to see. 

Special Needs WebTV: Announcing Family Network TV

How great would it be to have a WebTV channel dedicated to the needs and interests of families and professionals dealing with disabilities? Anyone with Internet access, anywhere in the world, would have access to the information and support available there.

Susan Stephens had a vision to make this happen, and it’s about to become reality! In the middle of January, 2011, Family Network TV will launch its premier WebTV lineup.

Check out “http://www.familynetworktv.com/: Uniting the Special Needs Community Worldwide.” Isn’t that subtitle an exciting one? I think of Internet friends across the globe. These are parents and teachers I’ve never met in person but who deal with the same issues of disability as I. Many struggle alone in countries where the lack of resources results in isolation and in unmet educational and medical needs.

Sharing information is a start towards correcting this situation; the idea of a worldwide network is thrilling!

Look at the lineup of shows premiering in mid-January, 2011...there is some great stuff planned!

Dare to be Rare: Hosted by Meagan Cross filmed in the Australian rainforest (Angelman syndrome and other rare disorders).

The Imperfection Connection: Hosted by Patty & Gina authors of “Shutup About Your Perfect Kid” (this pair hosts a lively website here: http://www.shutupabout.com/. If their show is anything like their site, it should be both thought-provoking and quite humorous!).

Siblinghood: Hosted by 4 typical teenagers with sibs that have special needs, including autism, Tourette syndrome, Down syndrome, and a rare chromosomal deletion.. Nick Lombardi, Amit Hezi, Alex Westcott, and Maggie Badock.

Perspective: Hosted by Tara Ecklund featuring the perspective of members of the special needs community from parents, teens, college students, business owners, adults and seniors with disabilities.

Abilities Expo TV: Episodes to include highlights from the Abilities Expo across the US featuring innovative products for the special needs community.

It’s A Matter of Law: hosted by Sheryl R. Frishman, Esq. & Jill F. Faber, Esq. from the law offices of Frishman & Faber, P.C., from New York. The show will cover all of the legal aspects of having a child with special needs so you can be an exceptional advocate for your exceptional child! Sheryl and Jill are not only highly experienced attorneys but parents of children with significant special needs and zealous advocates for children and adults with special needs and their families. No family member of a person with special needs should miss this informative and exciting new show!

Therapy Central: Episodes will explore therapies that are available and discuss their benefits. (Music, Listening, Dolphin, Suit Therapy, Conductive ED).

As we step into the year 2011, I wish you all blessings, happiness, and health.

EDucational Website: SET-BC

The Special Education Technology Centre in British Columbia is a wealth of information for teachers and parents as well. Their website is a treasure of resources just waiting for you to use in your classroom or home.

One fabulous thing I’ve observed about special needs parents is how enthusiastically they tend to take on the roll of providing instruction to their children at home. The biggest limit seems to be availability of expensive resources…but the SET-BC website can help fill that void.

So, roll up your sleeves and let’s take a walk through the website.

The most useful tab to those living outside British Columbia is the Learning Centre. These resources are free to anyone to use. Four main headings under the Learning Centre tab will take you to some incredible gems.

At the Learning Centre home, you will find an extensive collection of articles, webcasts, software trainings, and other resources. The collection is searchable or can be browsed by category through the tabs across the top. Honestly, I could lose myself at the Learning Centre homepage for days on end. There is just so much there!

The Accessible Books page provides you with both premade stories for the computer (circled in red) and instructional handouts and videos (circled in blue) that walk you through the process of creating your own books.

Take a look at the CurriculumSET page for premade activities to support instruction in the classroom. Activities are divided into content areas (science, language arts, health, math, etc.) and age level. There are low-tech handouts for students, as well as onscreen activities for Boardmaker, Clicker 5, Classroom Suite, Kurzweil, Solo, and more.

A great help for families is the PictureSET page. Downloads include both Boardmaker files (which can be customized in Boardmaker for individual users) and .PDF files for families who do not own Boardmaker. There are also some boards for specific communication devices. Symbols are organized by topic...

...and purpose (activities/games/songs; support stories; visual/vocabulary).

Families who want to get started with symbol communication for their non- or minimally-verbal children can find some extremely helpful downloads through PictureSET.

If you are a resident of British Columbia, there are even more fantastic resources available through SET-BC, so keep on exploring after you’ve checked out this section. There are local events you won’t want to miss, training opportunities, technology support, a lending library (much larger and more current than the one available in our state!)…

I hope you will have a bit of free time over the Thanksgiving holiday to browse through the SET-BC website. Even if you have visited it before, check for updated resources. There have been some wonderful additions made in the past few months! Check out the Assistive Technology Considerations for students with a wide variety of disabilities--good stuff!

There is so much to be grateful for this season. Happy Thanksgiving!

Rose-Marie

Improved downloads, just for you!

I wanted to let you know I'm moving the documents here on Adapting Creatively over to a new host that is much more download-friendly. If you have been unable to access the downloads before, they are now up at Google Docs. This site is able to present them as written and free of charge (a problem with each of the other hosting sites I've tried).

The Best of the Best AT/AAC Websites

G-Tube Jammies

PLEASE let me know if you have any trouble accessing either document. Thanks!

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Update (2/9/11)--A reader brought up that the download to the PVC Assitive Technology Supports link had added a password requirement that wasn't there when I originally linked. This new link to the PVC book should take you there. Thanks for your patience!

Seizure Tracker: a favorite website

Let's face it, seizures stink. They really do. But when they are a part of your child's life, you do have to deal with them. One thing that has helped our family tremendously is the free online tracking and reporting tool offered by Seizure Tracker. It was created by a family in Virginia out of their need for a system to track their son's seizures. It beats any calendar or reporting form our neurologists have ever given us or that I've tried to put together myself.

Here's what the good folks at Seizure Tracker have to say about themselves:  "Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure causes or triggers, seizure activity, seizure medications,  along with other seizure treatments. Users have the capability of logging seizure activity on their personal computer, on  any web enabled mobile device including the iPhone, or on paper forms that correspond to the online logging forms. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers."

Here's what we've found...it's easy (and we love free!) to set up an account with Seizure Tracker. It's quick to fill in the checklists and create reports and charts containing the information that you and your child's neurologist find most helpful. They have added a new section for people using a VNS to manage their seizures. I have never used the tool on a mobile device, which is a VERY useful capability, so I can't comment on how easy or difficult that might be. Another cool feature we've never used is the ability to email the data directly to your neurologist. If anyone has feedback on either of those, please do post a comment for other readers. Overall, Seizure Tracker is a very valuable tool that I recommend to any family needing to track their child's seizures.

On a different note, tomorrow is The Big Day for announcing the winner of the g-tube pajamas! Be sure to let your friends know about the giveaway since there's only one more day to enter to win...

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A correction to my post earlier today...I was reminded that Seizure Tracker allow you to customize for seizure symptoms. My apologies! If you find Seizure Tracker useful, I hope you'll drop a line to the sponsors to let them know. We can all use a little encouragement now and again. Thanks!

Rose-Marie

Resources for free communication software

If you have been making up symbol cards or boards from scratch using tables in your word processor, you may be feeling the need to speed up and simplify the process.  While commercial communication software is fabulous for this, it is a luxury not always available or affordable for all families. Today I'm sharing a link for a list of free programs you can use to create communication symbols for your child. Since you have been working on figuring the most appropriate style/size of symbol for your child (you have been, right?), you will be able to judge which on the list best fits your needs. You see? There is method in my madness at having you start from scratch in creating your symbols...it exposes you to the questions and frustrations that make you a better evaluator of the options out there!

This link for free programs comes from one of the greatest Web resources you will ever find...Kate Ahern's amazing blog, Teaching Learners with Multiple Special Needs. I need to tell you a little about the inspiring Kate Ahern. Kate works tirelessly to bring the best of the newest information out there to people working with kids with severe needs. Seriously, I don't know how she does it. She spends her days working directly with kids doing creative things and then comes home and collects all this fabulous information to pass along. She's incredible. Kate's dedication has lifted me up at times I've felt a bit discouraged in trying to meet my daughter's needs, because here is a person who lives and breathes the mission of helping kids just like mine. She reminds me that there really are some great folks out there. Please bookmark her award-winning site or sign up for RSS feeds; you don't want to miss anything. And sometime when you have endless hours to spend filling your head with more terrific information than it can possibly hold, go back through her early posts...her archives are gold. No, I take that back...they're platinum.

If you love Kate's helpful information as much as I do, please drop her a note. We all love a little encouragement.

Onesies extenders

I found this great idea for onesies extenders that I just had to share! I know, I know, we're in the middle of talking about ideas for non-verbal communication, but this is just too good to pass up. There is someone, somewhere, who could use this information today and it deserves to be shared.

Kimbo, at "A Girl and a Glue Gun," posted a wonderful tutorial for sewing cute and very practical onesies extenders. The question comes up among families with kids-bigger-than-toddlers quite frequently about where to find large-sized onesies. There are a host of reasons:  protecting diapers from busy hands, hiding g-tubes away from still other busy hands, keeping undershirts tucked into wheelchair pants...if you're a parent of a kid who needs to be in onesies long after their size is commercially available, go ahead and insert your specific reason here: ___________________________.

Kids tend to grow long and lanky after toddlerhood and the first sign of "shrinking" onesies is seen at the crotch rather than in the width around the chest. Kimbo's solution is simple, inexpensive (unlike the speciality adapted onesies--OUCH!), fairly quick, and requires very minimal sewing skills.

So, many thanks to Kimbo. Enjoy!

The Best of the Best Assistive Technology and AAC Websites

Recently I've had some requests for a handout from a presentation I gave in the Spring of 2009 on great websites useful for assistive technology and AAC. I really want to get this out for folks to use, although I have to admit that it will be a few days before I can check out each of the links to make sure they are still functioning. It's tough for me to put something up before I've had a chance to be certain everything is current, but part of an "adapting" mindset is that sometimes we can't let ourselves get bogged down in perfection. Given how much is on my plate today and over the next few days, "good enough" is just going to have to suffice.

So, with pleasure, I present "The Best of the Best AT/AAC Websites." Enjoy!

Here's a link to another location on the Web for "The Best of the Best AT/AAC Websites" at Google Docs, if you are unable to download from Scribd.

Rose-Marie