Posted in Autism, Down syndrome, Resources for Special Needs, Uncategorized

Blog #144~Inspiring Books Related to Down Syndrome

Blog #144~Inspiring Books Related to Down Syndrome

As Mother’s Day approaches, I wanted to highlight a few more books.  These books would make a nice gift for a mom who has a child with Down syndrome.  My son Nick is 22 years old and has Down syndrome and autism.  It’s been quite a journey, one that I’ve been writing about for several years.  Here are a few books highlighted in this month’s newsletter from the National Association for Down Syndrome (NADS) www.nads.org.  Thank you NADS for the great list!  I also added in a couple of more that I found on Amazon:

Adams, Rachel, Raising Henry (Yale University Press, 2013).  A Columbia University professor reflects on raising her son with Down syndrome, on genetic testing and on the paradoxical role of disability in our culture.

Becker, Amy Julia, A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny (Bethany House Publishers, 2011).  The Princeton Theological Seminary graduate explores the changes in her life and faith after the birth of her daughter with Down syndrome.

Groeberg, Jennifer Graf, Road Map to Holland: How I found My Way Through My Son’s First Two Years With Down Syndrome (NAL Trade 2008).  A mother describes the period after her son’s birth.

Hale, Natalie, Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier (Woodbine House, 2011).  Practical, uplifting advice covering important issues associated with Down syndrome.

Hampton, Kelle, Bloom: Finding Beauty in the Unexpected-A Memoir (William Morrow, 2012).  A popular blogger (Enjoying the Small Things) reflects on the changes in her life after the birth of her daughter with Down syndrome.

Lee, Marjorie Sullivan, Bloom where you are Planted (Tau-Publishing, 2012).   The story of her son Kevin, and how their lives were transformed becoming advocates for over four decades.

Murray, Kathleen PhD, Count It All Joy (Westbow Press 2015). A mother’s journey including lessons learned from her son with Down syndrome.

Silverman, Amy, My Heart Can’t Believe It: A Story of Science, Love and Down Syndrome (Woodbine House 2016).  Journalist, blogger and NPR contributor Amy Silverman recounts the impact on her life of the birth of her daughter Sophie, and the gradual evolution of her attitudes about Down syndrome.

Soper, Kathryn, The Year My Son and I Were Born (GPP Life 2010).  A memoir which records the author’s experiences after the birth of her son with Down syndrome.

Soper, Kathryn Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (Woodbine House, 2007). A collection of personal stories, sixty-three mothers describe the gifts of respect, strength, delight, perspective, and love, which their child with Down syndrome has brought into their lives.

Gifts book cover

Soper, Kathryn Gifts 2 How People With Down Syndrome Enrich the World (Woodbine House, 2009).  The follow-up to the bestselling first volume, Gifts 2 presents a broader perspective on Down syndrome and life by including passionate stories by siblings, grandparents, cousins, aunts and uncles, as well as mothers of older children. Friends, teachers, medical professionals, and coaches also share the joys of knowing and caring for someone with Down syndrome.

The power of a book can give you inspiration and hope.  Back in 1994, when Nick was just a few months old, I found that book.  Count Us In: Growing Up with Down Syndrome (A Harvest Book) was written by two young men, Jason Kingsley and Mitchell Levitz. I clung to every word. They shared their innermost thoughts, feelings, hopes, and dreams, their lifelong friendship—and their experiences growing up with Down syndrome.  The book is smart, charming, witty and truly shows their full potential. Thank you Jason and Mitchell!

In the current addition, the authors discuss their lives since then—milestones and challenges, developments expected and unexpected—in a new afterword….

Count Us In

Please feel free to share this book list and any of my blogs.  I write to raise awareness, and more important to offer hope and encouragement.  Next month, I will highlight books written by fathers!  That’s what is in my noggin this week.

~Teresa

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Posted in Down syndrome, Dual Diagnosis Down syndrome and autism, Resources for Special Needs

Blog #143~Count it All Joy Life’s Lessons from a Child with Special Needs

Blog #143~Count It All Joy Life’s Lessons from a Child with Special Needs

This week I wanted to highlight a book I just finished reading.  The book is titled; Count it all Joy- Life’s Lessons from a Child with Special Needs by Kathleen Murray, PhD. 

count it all joy book

Count it All Joy chronicles Kathleen Murray’s candid account of her inner struggles after learning about her son’s diagnoses of Down syndrome, autism and a congenital heart defect.  Her book is a testimony of the life lessons her son, Christian has taught her.  Lessons that she may have not learned had it not been for what many others consider his disabilities.

Each lesson has a heading such as “Doors,” “Heart”, and “Worry” that opens up a different world of caring for a child with special needs.  These lessons are paired with spiritual quotes from scriptures that complement the journey and ultimately the transformation towards unity, happiness, humility and ultimately unconditional love.

Her desire to tell her stories is to let parents and caregivers of a child with special needs know this:  “It’s not going to be okay; it’s going to be better than okay-much, much better!”

In Lesson 3 “Doors” she felt the emotional doors shut immediately upon Christian’s birth.  The doctors could hardly look her straight in the eye, as they delivered the news that he had Down syndrome.  Negative images came into her mind, like he won’t go to college; instead he will pack groceries or wipe tables.  I certainly recall the same scenario when my son Nick was born 22 years ago.  Nick also has Down syndrome and autism.

In Lesson 4 “Locks”, Kathleen writes about the vigilance of being on constant watch of her son.  This is certainly a common theme when taking care of a child with both Down syndrome and autism.  Elopement is a concern, and a topic I covered in last week’s blog.

In Lesson 6 “Eyes” she candidly describes how she disliked Christian’s squinted eyes when he was born.  Again, those negative images bubbled to the surface on what he may never be.  In this lesson you can see her transformation clearly happening.  It is very moving.

These lessons are honest and filled with struggle, grief, humor and hope.  In Lesson 8 “Mirrors”, there is a letting go of those negative images.  You can feel the shift which turns to joy.  “Christian has given me the strength to see him and see myself as God sees us, without labeling, categorizing, or judging, and with pure, unconditional love reflected in our image in the mirror”.  

I appreciate these lessons and can attest to the fact that my son Nick has taught me so much about life and love.  I’m a much better person because of Nick.  Yes there have been struggles, but finding the joy out of them is the most powerful message of all.  Count It All Joy would make a wonderful gift for Mother’s Day.  Signed, personalized copies are available from Dr. Murray by email (kathleenmurray1000@gmail.com) or online at WestBow Press, Amazon, or Barnes & Noble. 

Kathleen puts it perfectly, “Choose joy in the face of challenging circumstances in order to live a life of contentment and hope”.  The flower can emerge from the icy ground.  And yes, it is going to be better than okay, much, much better!  That’s what is in my noggin this week!

~Teresa 🙂

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Posted in Autism, Down syndrome, Resources for Special Needs

Blog #138~10 Sites Featuring Gift Ideas Designed by Persons with Special needs

Blog #138~10 Sites Featuring Gift Ideas Designed by Persons with Special Needs

I love to go shopping especially when I find unique gift ideas.  So this week, I am super excited to share this list of 10 sites that feature the talents by persons with special needs. 🙂  My son Nick is 22 years old.  He has Down syndrome and autism.  Many of the people on this list have Down syndrome or autism.  I am so inspired by their work and can’t wait to add some of these to the cart…..

10 Sites Featuring Gift Ideas Designed by Persons with Special needs:

http://papercloudsapparel.com/ T-shirts, hats and totes designed by artists with special needs

nick fire truck shirt

Nick wearing Paper Clouds Apparel “Fire Truck Shirt” designed by artist Justin Lundeen

http://www.christianroyalpottery.com/pages/about  Beautiful pottery (bowls, platters, plates, jewelry) by Christian Royalt

Pottery   christian royal potttery

 

http://specialsparkle.com Kelly designs and makes fashionable jewelry

http://www.brownbearproducts.com/ Erik Behnke, artist

http://oly-wa.us/dkarts/index.php Dylan Kuehl, artist

http://www.cinnamonsfloridakeysart.com/ Cinnamon Edgar, artist

cinnamon edgar

http://www.inspires2aspire.com/ Cards by Todd Eisinger

http://www.artistmichaeljohnson.com/  Michael Johnson, artist

http://www.Facebook.com/NickBurshArt  Nick Bursh, artist

http://www.simplyadorableblankets.org/ Baby, wedding and stadium blankets

weddingBlk_lrg

I hope you find the work of these artists with special needs inspiring.  Please consider their talents the next time you are looking for a unique gift idea. Let me know if you know of any other talented artists with special needs we can add to this list.  That’s what is in my noggin this week.

~Teresa

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

Blog #131~Christmas Ideas for a Child with Special Needs

Blog #131~ Christmas Ideas for a Special Needs Child

There’s only 11 more shopping days until Christmas. Are you struggling to find a gift for a child with special needs?  My son Nick has Down syndrome and autism.  For 21 years I’ve worried if I was doing enough and finding the right toys to help him thrive while having fun.  You name it we’ve done it from the mini trampoline to Tickle Me Elmo (and every light up, musical toy in between).  🙂

Nick toys

Children with special needs often have sensory issues. They struggle to process sensory information.  Some children are sensitive to touch, while others are sensitive to sounds or lights.  Toys and activities geared to be more visual, tactile, and interactive can help with these sensory issues.  Gifts that appeal to the senses like plushies, figit toys, putty, stress balls and flashlights are popular.

figit toys

Books that have predictable patterns, repetition and rhymes are enjoyable such as the classics like “Good Night Moon,” “If You Give a Mouse a Cookie,” and Dr. Seuss books. Interactive books can help with language skills.

talk

Puzzles can help with fine motor and cognitive skills.  Many have sound bites to provide additional feedback.

soundpuzzle

More gift ideas………

*Music table

music table

*Art easel

*Vibrating pillow

*Air hockey

*Musical animals

music animals

*Musical trampoline

trampoline

*Solar System in My Room

solar system

*Tranquil turtle

tranquil turtle

*Putty (www.puttyworld.com) It glows and changes colors!

puttyworld

You can find these gifts on the Amazon and Toy R Us websites. There are many more ideas at www.nationalautismresources.com.  Also, I have a resource page listed on this Wordpress site.

Holiday Ideas from Suburban Pediatric Therapies (where Nick goes to speech and occupational therapy):holiday gifts spt

 

Cheers to a fun filled holiday season for your child with special needs. I hope these gift ideas will help make the season a little brighter. Thank you to all the parents and therapists who helped to contribute to the gift list.   That’s what is in my noggin this week.

~Teresa 🙂

 

 

Posted in Down syndrome, Resources for Special Needs

Down Syndrome Awareness Month (Re-blog)

 

Down Syndrome Awareness Month!

Photo on 2011-06-12 at 18 01 #4

Nick says yay and thumbs up!  October is Down syndrome Awareness Month.  Here is a blog I did a few years ago that will open your eyes to Down syndrome @ https://nickspecialneeds.wordpress.com/2012/10/15/blog-26-down-s…wareness-month/

Thank you for reading and sharing Nick’s world.  That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Down syndrome, Resources for Special Needs

Blog #98~More Special Needs Resources

Blog #98~More Special Needs Resources

How do I even try to come close to topping last week’s blog post?  Ryan Solomon’s story about being Nick’s Peer Partner touched so many people.  This post got 1,750 views (the most ever) on my Facebook Page Down Syndrome With A Slice Of Autism!  🙂 Just in case you missed it, here’s the link, and don’t forget the box of tissues:

@https://nickspecialneeds.wordpress.com/2014/06/02/blog-97-being-…s-peer-partner/

Nick and his Peer Partner Ryan…..

Peer Partners

This week is all about more resources related to special needs.  During the recent NADS Family Behavior Retreat, I lead a brainstorming session to pool together all the resources the parents had.  We put our noggins together and found support in these areas:

*Autism Support and ABA Therapy

*Advocacy and Legal

*Doctors, Dentists and Specialists

*Therapists

*Recreation and Leisure

*Online Support Links

*Toileting and Personal Care

*Tech Support and AAC Devices

*Safety and Wandering Prevention 

Here is what we came up with.  There are many more that are based out of the Chicago area that are not listed below. If you would like those as well drop me a message.  Please note: This is a parent recommendation list.  NADS does not endorse, recommend, or favor any products, processes or services on this list.

Autism Support and ABA Therapy: 

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

www.theautismprogram.org Autism resources

Advocacy and Legal:

www.SpecialNeedsFreedomGuide.com Free Estate Planning Guide

www.LifesPlanInc.org  Estate planning

www.specialneedsadvocacy.wordpress.com Advocacy for parents

www.specialedadvocacy.orgAdvocacy site for parents and teachers

Doctors, Dentists and Specialists, Therapists (are all Chicago based)

Recreation and Leisure (most are Chicago based but here are a few others):

www.nps.govNational Park Services free camping tent and tools for first time campers

www.discovernac.orgNational Abilities Camp in Park City, Utah

www.thebikerack.com Special needs bikes and bike modifications in St. Charles

www.joniandfriends.orgParent/child camp in Michigan

www.gigiplayhouse.org Down syndrome Awareness Centers

www.icanshine.org Loose the Training Wheels bike camp

diveheart.org  Scuba and Snorkeling for persons with disabilities

www.bigbeadjewelry.com  Special needs micro-enterprise

www.specialsparkle.com Jewelry micro-enterprise run by a young adult with Down syndrome

www.downsdesigns.comSpecialty clothing and jeans that fit

hammertravel.orgTravel opportunities for special needs

Online Support Links:

www.parentcenterhub.org  Extensive information and help with links your state/local agencies

www.behavioradvisor.com/FBA  Behavior support site

www.myautismteam.comNetwork site for parents

www.bridges4kids.orgGreat Resources for special needs families.

www.mayer-johnson.comBoardmaker software

www.teeach.comInformation on TEEACH materials

www.bridges4kids.orgIEP Goal helpful ideas

www.noahsdad.comEnjoyable site highlighting Down syndrome

Toileting and Personal Care:

www.especialneeds.co/diapers-pads-incontinence-swim-diapers.html

www.Theraquatics.com  Swim diapers for child and adults

www.incont.org  Diapers, swim diapers and related products

wetstop.com Bed wetting alarms

Tech Support and AAC Devices:

www.easterseals.orgAssistive tech evaluations and training

www.mydynavox.com Free 30 day trial app available ($29 monthly thereafter)

www.silver-kite.com/touchChatCommunication application for iPod/iPad technology

www.assistiveware.com/product/proloquo2goAugmentative and Alternative Communication

Safety and Wandering Prevention:

www.awaare.org.  Autism Wandering Awareness Alerts Response Education has a comprehensive list of tips, materials and tools.

www.medicalert.org Medical ID bracelets

www.projectlifesaver.org Tracking system located in various cities

www.caretrak.com GPS Tracking bracelets connected to participating police departments

safetynetbylojack.com  GPS tracking device for wrist or ankles

caretrak bracelet

There are more resources and links in Blog #84 and #85 (located in the February 2014 archives). If you have any others please share them in the comment section below. This list (much like Nick’s behavior plan and * painting the Golden Gate Bridge) is never quite complete and always evolving.

Golden Gate Bridge with the family and my niece Courtney when we lived outside San Francisco 15 years ago.  Note barefoot Nick (he would never keep his shoes on back in then)…….

golden gate bridge

That’s what is in my noggin this week. Stay tuned for more about Nick’s world next Monday. 🙂

~Teresa

*According to goldengatebridge.org:  There are a couple of misconceptions about how often the Bridge is painted. Some say once every seven years, others say from end to end each year. The truth is that the Bridge is painted continuously. Painting the Bridge is an ongoing task and a primary maintenance job. The paint applied to the Bridge’s steel protects it from the high salt content in the air which can cause the steel to corrode or rust.

Posted in Autism, Resources for Special Needs

Blog #91~Autism Statistics: 1 in 68 Children

Blog #91~Autism Statistics: 1 in 68 Children

As most people know, April is Autism Awareness Month. Just a few weeks ago came the sobering news that 1 in 68 children in the US have autism (according to estimates from CDC’s March 2014 study).

autism 1 in 68

Take a look at how the numbers have increased over the years…..

autism through the years

The new statistics represent a 30 percent increase from the 2012 estimates of 1 in 88 children with autism. Why are the numbers growing so rapidly? Some speculate that it’s because the diagnostic methods which have improved over the years. I find it hard to believe that this is the only reason that the numbers are increasing. According to TACA (Talk About Curing Autism (www.tacanow.org), More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined. In addition, autism costs the nation over $137 billion per year, a figure expected to significantly increase in the next decade.”

Autism has no single, known cause. There have been numerous studies linking autism to a wide variety of genetic and environmental factors. There have been several studies linking vaccines to autism and many parents who feel strongly that this was the case with their children.

Here’s the bottom line, there is a generation of children and their families who have been severely affected by autism. These children, like my son Nick are growing up and becoming adults.

Nick age 20……

IMG950055

Children and adults with autism are out in the community full force, with even more coming behind us. It’s time for a comprehensive national strategy. We need leadership to help us find answers for causes, treatment, solutions and resources for people who live with autism. We need compassion when we are out in the community struggling with our kids who make loud noises, flap their hands and have knock down drag out meltdowns. Changing the light bulb blue to promote  autism awareness isn’t going to help make things better for the lives of those affected by autism.

light it up blue

It’s time to send a loud message to Washington that the needs of the autism community are growing rapidly and the resources are limited, (not to mention the family bathrooms). I worry that when my son ages out of the school system at age 22, he’ll be stuck on a waiting list because there aren’t enough facilities available for community work, leisure and a secure group home. I am not alone here; there are almost two million others in the country who go to bed each night with the same concerns. That’s what is in my noggin this week.

~Teresa

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:

DSAwarenessMagnet

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:

autism ribbon

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)…….

photo (20)

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