Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs, Resources for Special Needs

Blog #85~ 10 Great Special Needs Resources

Blog #85~ 10 Great Special Needs Resources

Last week I targeted some links specific topics related to Down syndrome and autism.  I have a few more that relate to a variety of areas related to the special needs population.  You can click right on these links and check them out:

www.wrightslaw.com  Comprehensive information Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities.

www.woodbinehouse.com  Publishes book for parents, children, teachers and professionals related to special needs.

www.specialreads.com Special Reads for Special Needs Publishing was founded by Natalie Hale in 2000 to answer a need for effective, entertaining reading materials for learners with Down syndrome, Autism, and other developmental delays.

www.hopefulparents.org  Grassroot support for parents of kids with all types of special needs.

www.supportforspecialneeds.com  A community that offers a chance to exchange wisdom and ideas among one of the most powerful group of people we know.

www.leslie4kids.wordpress.com   Comprehensive information on Childhood Apraxia and Speech, parenting and child development.

www.specialsparkle.com   Beautiful jewelry designed and made by a 21 year old young lady who has Down syndrome.

www.downsdesings.com Downs Designs provides a stylish clothing line with proper fitting for unique body types associated with having Down syndrome which is easy to get on and off.

www.hammertravel.org  Offers a variety of travel opportunities for individuals with developmental disabilities

www.nickspecialneeds.wordpress.com   This site which provides information on a variety of special needs topics.  Much of the information specific to a dual diagnosis of Down syndrome and autism including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

Hope you find these additional resources for special needs helpful. That’s what is in my noggin this week. More about Nick’s world next Monday, stay tuned…….

~Teresa 🙂

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs, Resources for Special Needs

Blog #84~ Resource Links Related to Down syndrome and Autism

Blog #84~ Resource Links Related to Down syndrome and Autism

Today is President’s Day, so there is no school.  My ability to focus and write is hindered by interruptions from Nick who is making loud mooing noises, pushing the fan button on the microwave, dropping things behind the TV and watching “The Other Guys” while tapping a can of tennis balls against his mouth.  Yes, that’s a slice of  Down syndrome and autism here this morning………

Nick tennis balls

So this week I’ve included my favorite resource links related to Down syndrome and autism:

Down syndrome links:

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www.ndss.org  The National Down Syndrome Society is the national advocate for the value, acceptance and inclusion of people with Down syndrome.

www.ndsccenter.org  The country’s oldest national organization for people with Down syndrome, their families and the professionals who work with them.

www.nads.org   NADS is the National Association for Down syndrome and a solid support group in the Chicago area.  There is also more links for dual diagnosis of Down syndrome and autism here (including a complete list with signs and symptoms for parents wondering if their child has more than just Down syndrome). 

www.gigiplayhouse.org   Down syndrome Awareness Centers all over the Midwest and expanding to New York, NY and Mexico. These centers provide play, fitness and social groups.

www.noahsdad.com   This site is invaluable for parents who have a baby or child with Down syndrome. There is some great information and useful tips and links and positively focused.  It is one of my favorite websites.

www.futureofdowns.com   Run by parents of children with Down’s syndrome.  Covers a wide range of topics regarding babies and children with Down’s syndrome, pregnant and in need of advice on screening and tests or have just received a positive diagnosis following an amnio or CVS.

Autism Links:

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www.facebook.com/autismdiscussionpage  This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum. This is one of my favorite links related to autism.

www.autismspeaks.org  Autism Speaks provides information and advocacy and good general information and links.

www.autism-society.org  The Autism Society improves the lives of all affected by autism through education, advocacy, services, research and support.

www.tacanow.org  Talk About Curing Autism and has a ton of links and articles along with coffee groups.

www.brianraymondking.com  Brian King teaches his proven methods to individuals and their parents across the country in a private one-on-one format using the latest technology. He  writes a variety of articles, is an author, speaker and trainer  for schools, parents and support groups.

www.bridges4kids.org  Great resources for special needs families. One of my favorite go to sites.

www.myautismteam.com Parents share daily trials, triumphs, questions and recommendations

www.mayer-johnson.com  Boardmaker software for assistive technology/AAC devices

www.teeach.com  Information on TEEACH materials

www.pottytrainingsolutions.com Gathers the most common problems and their solutions to help take the stress out of this major milestone.

www.easterseals.com Easter Seals offers programs, training and equipment for families.

www.specialedadvocacy.org  Advocacy site for parents and teachers

Down syndrome and autism links:

down syndrome and autism intersect

www.nickspecialneeds.wordpress.com My site which provides information on topics specific to a dual diagnosis of Down syndrome and autism including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

www.ds-asd-connection.org  Offers good information related to a dual diagnosis of Down syndrome and autism.

www.theupsideofdowns.org  Provides support, advocacy and information specific to Down syndrome and autism.

In addition, let me add that there are several Facebook groups directly related to Down syndrome and autism.  These groups are a safe place to share information, ask questions, and share the crazy things that our kids with a dual diagnosis do.  No one in these FB groups would  bat an eye if you posted a picture like this……… (In fact they would hit the like button and add in their own pictures in)…….

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There is help out there right at your finger tips.  Let me know if you have any more to add in.  Thank you for reading and sharing my blog. Now, it’s time to gather up the contents of my purse that Nick decided to dump all over the living room floor.  That’s what is in my noggin this week! 🙂

~Teresa

Posted in Autism, Down syndrome, Fun Side of Nick

Update~Nick Turns 20

Update~Nick Turns 20

I can’t believe that Nick turned 20 years old last Friday.  It seems like just yesterday that he came into this world.

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Nick enjoyed his favorite meal that evening, a big bowl of pasta!

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He had a blast at school with a birthday dance party earlier that day.  He loved opening his presents.  Big guy is convinced that all greeting cards make noise now.  Here he is stimming away to the card his Aunt Laura and Uncle Scott sent him.

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Last night we went out to dinner with the family.  Guess what Nick had to eat?  That’s right, another big bowl of pasta.  We topped off the evening with a decadent triple chocolate cake!  After a evening of gluttony, we settled in to watch The Beatles special.

Beatles birthday

I have a lot of thoughts floating around in my noggin about the last 20 years, and raising a child with Down syndrome and autism.  It’s a mixed bag of emotions~joy, triumph, gratitude, and amusement tossed with fear, sadness, frustration and anger.  I’m going reflect for a bit and share at a later date.  For now, I will try to get use to the idea that Nick is not a child anymore.  Not an easy task given his childish ways.  That’s what is in my noggin this week.

~Teresa

Posted in Autism, Down syndrome, Speech and Occupational Therapy

Blog #83~Sensory Anchors

Blog #83~Sensory Anchors

Nick doesn’t play with toys like most kids do. Having Down syndrome and autism has changed the playing field for him.  He tends to use many of them to seek out some sensory benefit.  For instance, he likes to mound his toys up in one spot…..

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Even more fun was piling them on our cat……

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The other day he was stacking random objects here and there around the house.

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Why do kids with autism, Down syndrome and other sensory related issues  play with objects in such different ways?

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There are many sensory issues associated with having autism.  Their world may get too bombarded with stimulus or feel unpredictable and overwhelming.  Finding a way to stay grounded becomes even more of a need when the senses are flooded with too much stimuli.  Often a child with sensory issues seeks out comfort in the form of a “sensory anchor” which helps them calm down.  These sensory anchors can be a repetitive activity that provides comfort and is soothing for them

Here are some examples of sensory anchors: 

*Lining up toys

*Spinning objects

*Following a line with their eyes

*Sitting in bean bag chair or swinging

*Looking at reflective objects

*Hand flapping

*Rocking back and forth

*Rubbing hands together

*Chewing on sleeves or collar of shirts and other non-food objects

*Smelling things

*Making repetitive sounds with mouth

How many of you have been out in public and notice a person with autism making odd sounds, rocking, or maybe banging on something loudly. These are ways in which they are  trying to cope in the world by using sensory anchors.  Nick’s include a variety of activities. He often chews on his sleeves and collar of his shirt.  Other times he is rocking, hand flapping, and tapping or making sounds with his mouth (that by the way sounds like a cow mooing)  🙂 

Nick’s first choice and all-time favorite is tapping a can of tennis balls against his mouth!

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Second choice, doing heavy work vacuuming!

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I realize that some of these are not acceptable in public, so I try to find alternatives for such occasions. For instance, I will provide deep pressure in the form of hugging to help calm him down.  But around the house and in the car, I have to respect his need to do this to help him self-regulate.   After all, everyone has some way of doing this whether it’s nail biting, twisting your hair, chewing on a pen, sitting while one leg is fidgeting to stay alert.  We all find our own way to decompress after a hectic day, right?  What’s your sensory anchor?  Music, meditation, exercise, hit the hunting or driving range, X-Box, a bubble bath or glass of wine?

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Bottom line, it’s important to provide opportunities for a child with autism and sensory integration issues to get grounded and centered.  So if it’s a can of tennis balls, then so be it!  That’s what is in my noggin this week.

~Teresa