If you have or work with a child with special needs, the internet can be a scary place and one chock full of resources. The following are expert-endorsed sites for information, therapy tools and what all parents need: Understanding and support.
The National Down Syndrome Society (NDSS) recommends:
- NDSS’s online resource section, providing information from prenatal diagnosis to adult resources.
- TalkTools - speech, oral placement and feeding disorders as well as assessment and therapy services.
- Abilitations (which has joined with School Specialty) offers more than 4,000 products in areas such as balance, positioning, mobility, communication, fine motor and more.
- AbleData “is a great, objective resource that reviews all kinds of products, including therapy tools and toys,” says NDSS’s Julie Cevallos.
- AbleNet “creates ’solutions in context’ that excite and empower professionals who serve people with disabilities — as well as the people themselves — to transform quality of life,“ according to its mission, which focuses on solutions to help those with disabilities become active participants at home, at work, at school and in their communities.
- Toys ”R” Us Differently-Abled Catalog – “it’s so easy, accessible and not intimidating,” Cevallos says.
Sites for speech, feeding or GI issues
- GIKids provides easy-to-understand information about the treatment and management of pediatric digestive conditions, such as reflux and GERD, for children and parents.
- Apraxia-KIDS focuses on motor planning/apraxia issues.
- New Visions provides resources on feeding disorders. “This is a great website with in-depth articles,” says Julie Kouzel, SLP.
Resources for autism
- Autism Speaks is a leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.
- National Autism Resources includes an online store with affordable autism and Asperger’s products, sensory toys, weighted vests, autism school supplies, oral motor tools and more.
General resources for special needs
Says physical therapist Nikki Degner: “Children are like jigsaw puzzles. There are many pieces, and as you start to put the pieces together sometimes new things come up — which are just more pieces — and sometimes we have to tweak some things… to make the pieces fit. As we solve the puzzle, amazing progress will be made.”
Fun site for all children
Super Duper Publications was founded by a mom who created easy-to-use therapy materials while working as a speech-language pathologist.
How can social media help? As one mother of a child with Down syndrome posted recently on Facebook: “[There are ways to help] someone who is struggling to overcome a little bump in the long road to fully accepting their kid's diagnosis. There are always going to be bumps, from birth to adulthood, where you stop and say, “Why my kid?“
“You don't stand on the other side of the bump and hurl what you think is good advice to them; you stretch out your hand to help them get over the damn bump.”
While years ago, parents may have compiled binders of resources and information for their children, today's parents often create a special needs board on Pinterest. Most online resources allow readers to pin from their sites, or individuals may drag content to “Bookmarks” in their web browser, where “Pin It” will appear.
“Pinterest has been a wealth of info for me,“ says Jenn, who has two children, including a toddler with Ds. “I find the coolest stuff that we use therapeutically. [As a parent, you] always have to be willing to think outside the box and be resourceful.“
Inclusion for Children with Down syndrome has more than 1,200 members and provides information and support through dialogue from parents of children with Ds, care givers, practitioners and teachers.
Lennie Latham, ITFS, BA, has a regular go-to list of blogs. She says, “Occasionally, parents have something that they've found that works for their child that might work for other kids.”
- The Henderson Family - from a family whose child has microcephaly
- Before the Morning - by Patrice and Matt Williams, parents whose son has a rare genetic skin disorder called Junctional Epidermolysis Bullosa
- Fighting Monsters with Rubber Swords - by Rob Rummel-Hudson, whose daughter, Schuyler has Bilateral Perisylvian Polymicrogyria, a rare neurological condition that leaves her unable to speak
- Uncommon Sense - by the Nieder family, whose daughter, Maya has global developmental delays of unknown origin; blog includes information on Augmentative/Assistive Communication
Bonus resource: Compression vest, $45.95
Visit Pacific Pediatric Supply and search for “Weighted compression vest FF5330.“
Cari Fresoli, OTR/L, occupational therapist and co-owner of Lake Norman Children’s Therapy in Huntersville, North Carolina, says, “I love that it's a weighted compression vest and this price seems to be one of the best I've found. I have a family that has one from this company and they have been very happy with it!”
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