I have updated a few things and added some more resources on the page. Check it out or if you know of a loved one with a special needs child/person, please send them the link. Some of this information is not widely known and can benefit the people that need it most.
Ava is one of only an estimated 400 diagnosed cases in the WORLD!! As the technology grows to diagnose Kleefstra, the numbers are rising. We need to get awareness out there, so that the information is out there to help those that need it. For the past eight years, I have always educated and advocated everywhere Ava went. She is always a first case scenario and I have to take 2-3 binders full of paperwork to every first time appts that she has to make sure the Drs, therapists, etc know what Kleefstra Syndrome is.
I have also written Ava's Blog for the past 8 years. It has been a labor of love, pouring into it everything about Ava and Kleefstra Syndrome. There have been a few times where I thought I would stop it, but then someone always contacts me and tells me how much Ava's Blog has helped them, so I keep at it.
To learn more about Kleefstra Syndrome and how it affects lives go to www.kleefstrasyndrome.org
Help Ava and I Raise Awareness for Kleefstra Syndrome. Please Share this blog post!
"This presentation was compiled by Brian Foley with the help of Dr. Tjitske Kleefstra, Dr. Svetlana Yatsenko, and Prisca Middlemiss (Information Officer at Unique). Many thanks to all of you for producing this slideshow."
The Kleefstra Community is stronger then ever. The amount of children and adults being diagnosed is growing rapidly and we are all finding each other through social media. I understand when you google Kleefstra Syndrome, Ava's Blog comes up (it's been around a long time, 8 years) so I am making this post as a way for us to connect if you find yourself on here. I also have these in the side links on the right.
Kleefstra Community Forums, operated and run by members of the community http://kleefstrasyndrome.org/ Great site to get introduced to Kleefstra syndrome, and it's characteristics, news, updates, and community.
Unique http://www.rarechromo.org/html/home.asp is another great resource tool. Their mission is too provide support, and raise awareness for people with rare chromosome disorders.
If you are new to the syndrome,you are probably overwhelmed with the diagnosis, and everything that comes with it. You are not alone, there is a wonderful community out there, that is so friendly and supportive, you have to be a part of it to believe it. As always you can also ask me questions on here at any time, and I will answer what I can.
This year I thought I would do a small toy gift guide for special needs children. These are just from my own opinion and some of them we have, had, or I plan on getting for Ava. Most of these are sensory and cognitive toys, with a little bit of practicality thrown in. Every Christmas Ava has gotten therapy toys, and they have always been a big hit. This year will be no different. Hope this gives you some different ideas for the upcoming holiday season!
2013 Gift Guide for Special Needs Children
Click on the pictures to be taken to Amazon.com for more information on the products.
Set of 3 Assorted Tangle Jr. Fidget Toys -
Fuzzy, Metallic and Textured
Toys to keep your child busy, comes in lots of styles and colors.
Mega Bloks Big Building Bag, 80-Piece (Classic)
Building blocks that are big and easy to sort and stack. Light up your child’s imagination with these blocks. They will be using fine motor skills and cognitive thinking while they play.
Learning Resources Jumbo Farm Counters
Sort by colors, or animals, and learn to count!
Little Tikes Clearly Sports Bowling
These look so cool! Your child will be using their hand eye coordination to knock them down and also their stacking abilities to put them to rights again. They also have colorful balls in them for visual and auditory senses.
All In Toy's Liquid Motion Bubbler Fidget
A visual stimulation toy, that should grab the attention,
at least for a little while.
Fisher-Price The Farmer Says See 'n Say
This reminds me of the old classic! Music, sounds, and animals makes for a lot of ways to interact with your child.
Abilitations Biggie Frog Bean Bags
For the child that loves to throw things, do it with a fun flare!
Sensory Seeker Combo Pack
For the sensory seeking children, and with a variety of toys, you child is sure to find a favorite one.
Fisher-Price Laugh & Learn: Learning Piggy Bank
This was a favorite in our house for many, many years! Sorting, counting and music gave us a lot of fun interactions!
Learning Resources Ruff's House
Teaching Tactile Set
Play with the puppy while learning, textures, counting, and colors.
A fun way to incorporate balance and coordination.
Learning Resources Talk Board (Set Of 3)
Draw or place a picture on the board, and then record what it is. Can be used in a wide variety of ways.
Lacing & Tracing Dinosaurs
These fun dinosaurs give you several ways to teach fine motor skills.
Fold & Go Trampoline
Work your child's muscles, while they are having fun.
Edushape Baby Connects, Set of 12
These are fun little toys that teach colors, counting, shapes, great for fine motor skills!
Isokinetics Inc. Brand Exercise Ball - Anti-Burst - 3 Sizes - Choice of Color - For Fitness, Therapy, Sports Training, Yoga and More
We have had exercise balls in the house for the last 10 years. Great way to get your child to work on core muscles, balance, coordination and much more!
Great for oral motor stimulation!!
Tactile Tiger Hand Fidget
Sensory Stimulation brush
Mecanaids Adapted Scissors
with Easy Grip for Right or Left Hand
Great for just learning how to cut, they spring back to aid in fine motor skills.
DenTrust 3-Sided Toothbrush ::
Specialty Toothbrush for AUTISM & Special Needs
Practical and brilliant! Sometimes I only have a couple tries to get them done before she has a complete melt down.
Some books for the caregivers.
Always trying to expand my horizons and learn what I can, because no one else will take care of her like I do. It's always nice to see how other parents do things and get a new perspective!
There are a lot of great toys out there for special needs/sensory children. I know you can find something that is fun and educational too!