Mosey on over to Bloom and look around—you won’t be disappointed! While you are there, please leave a comment. They are always appreciated!
Creatively adapting the environment, the opportunities, the mindsets that touch our children with disabilities.
Showing posts with label Weekend Free-for-All. Show all posts
Showing posts with label Weekend Free-for-All. Show all posts
Join us at Bloom
Ah, summertime! I hope these summer months find you relaxing and enjoying time with family and friends.
I’m so excited and honored to have a post featured on Holland Bloorview’s special needs parenting blog, Bloom. If you aren’t familiar with Bloom, you are in for a fabulous treat. It’s a top-rated non-profit blog with outstanding contributors and one of the dedicated author/editors you will ever hope to meet.
Mosey on over to Bloom and look around—you won’t be disappointed! While you are there, please leave a comment. They are always appreciated!
Mosey on over to Bloom and look around—you won’t be disappointed! While you are there, please leave a comment. They are always appreciated!
Murphy’s Law Revisited
Water dripping on your head from the upstairs bathroom through the ceiling below is never a good thing. It isn’t related to special needs, but it adds more corollaries to our little collection of Murphy’s Laws.
And so, I present to you these corollaries, both for your entertainment and as bit of an explanation for why things on the blog have been quiet this week:
1) The room that has been most recently remodeled will be the one to suffer from disaster-requiring-major-repair.
2) For families living with access issues, that room will also be one that has been remodeled for access. In our present case, it is the only handicap-accessible bathroom in the house.
3) The timing of said disaster-requiring-major-repair will come when the schedule has least flexibility.
4) Aging features in a house that fit neither your needs nor tastes (i.e. carpeting much too uncomfortable for the amount of time a non-ambulatory child spends on the floor, and horribly ugly to boot) will last and last and last…and…last…interminably.
5) The budget for replacing these aging features will be needed to repair the room (fence, barn, fill-in-your-own-blank) remodeled just last year.
The good news is that my husband is quite handy. It seems we have caught the slow leak before dry rot set in. The weather is being cooperative for drying out lumber and for carrying new waterproof drywall from the home center. The repair should correct the problem that should never have happened in the first place.
But the nasty carpet will be here another year…
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
Blogs
Clothing
Clothing Tutorials
G-tube Clothing: In-Seam Openings (to be posted soon)
Books and Informational Articles
Homemade Blended Formula Handbook (Klein and Morris)
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.
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.
Free Online Switch Activities from Kate
Kate Ahern has done it again, showering us with a wealth of great FREE sources for switch activities! She is such a master at uncovering great stuff and generously passing it along.
I’m so grateful Kate has done this, as her list is ready for you now, ripe for picking. You can find some things today to keep your switch user(s) happy. I’ll keep plugging away at my review of these sites that I’ve been busily working on to share with you. Be watching for a switch-themed week coming up (date still to be determined); there are some fun things to share.
Be sure to hop on over to Kate's site to look at the free online switch activity sites she's posted. And be sure to leave her a note...she does so much for the special ed community.
Do you have any other resources to add to Kate’s list? If so, please do share!
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!
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.
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