Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

Blog #171~Rocking the Socks, and Helping Twice

Blog #171~Rocking the Socks, and Helping Twice

wehelptwo

The first part of rocking the funky socks campaign was to promote awareness on World Down Syndrome Day (WDSD), held each year on 3/21. The second part was for every pack that we sold, We Help Two donated a pair of warm, thermal socks which we donated to a local homeless shelter in our community.

My son Nick is 23 years old and has Down syndrome and autism.  The sock campaign raised $500.00 which we donated to Chicago based, The National Association for Down Syndrome, (NADS) http://www.nads.org.

world-down-syndrome-day

Last week, we took a full box of 59 pair of thermal socks donated by We Help Two, over to the Hesed House in Aurora, IL.  We Help Two partners with schools, organizations, individuals and non-profits to make twice the difference.

Nick Hessed House 2

 “The Hesed House is the second largest shelter in the State of Illinois, and the largest shelter outside of the city of Chicago. With the help of professional staff, alliances with outside agencies and 6,000 volunteers from 70 area churches, almost one thousand individuals (including 188 children) are served each year through Hesed House’s shelter and three housing programs. Hesed House sees 16 newly homeless individuals each week – that’s one new homeless individual every 8 1/2 hours. Hesed House strives to get 16 or 17 individuals out of homelessness each week.” 

hesed house logo

The Hesed House is not just a homeless shelter.  Besides providing shelter and supportive living, they also have employment training and education, along with medical assistance, counseling for substance abuse and mental illness, and offer state legal services.

Nick and I were pleased to pay it forward, with the donation of new thermal socks to Hesed House, courtesy of We Help Two.  For more information visit their website at http://www.wehelptwo.com.

Nick and Mom at Hessed House 2

A special thank you to Bethany from We Help Two, for reaching out to us for WDSD, to host a “Rock the Socks” campaign.  We Help Two is making a difference!   We were very happy to partner with them. Nick and I want to thank everyone who purchased and rocked the funky socks, and helped us make twice the difference.  That’s what is in my noggin this week! 🙂

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @ #nickdsautism

Twitter @tjunnerstall

 

 

 

Posted in Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

Blog #169~ I’m Very Aware of Autism and More

Blog #169~ I’m Very Aware of Autism and More

autism ribbon

April is “Autism Awareness Month” – a time to promote awareness, acceptance and attention to those people who are diagnosed as being on the autism spectrum.

Yes, I’m very aware of autism, and more.  So is anyone, who has been around my son.  Nick is 23 years old, and has dual diagnosis of Down syndrome and autism, (DS-ASD).  He does a good job spreading awareness wherever he goes. 🙂  Honestly, it’s hard for me to get on board with the “Light it Up Blue” campaign.  Why is that?  Because my son doesn’t fit in with any of the support groups for autism, due to his is lack of speech, cognitive and developmental delays.

“Autism or Autism Spectrum Disorder (ASD), is a serious neurodevelopmental disorder that impairs a child’s ability to communicate and interact with others. It also includes restricted repetitive behaviors, interests and activities. These issues cause significant impairment in social, occupational and other areas of functioning.”

autism awareness 2016

Since my son has a dual diagnosis of DS-ASD, I’m going to put my focus on this area.  According to The National Down Syndrome Society (NDSS) http://www.ndss.org:

“Children who have ASD may or may not exhibit all of these characteristics at any one time nor will they consistently demonstrate their abilities across similar circumstances. Some of the variable characteristics of ASD we have commonly observed in children with DS-ASD include:

  • Unusual response to sensations (especially sounds, lights, touch or pain)
  • Food refusal (preferred textures or tastes)
  • Unusual play with toys and other objects
  • Difficulty with changes in routine or familiar surroundings
  • Little or no meaningful communication
  • Disruptive behaviors (aggression, throwing tantrums, or extreme non-compliance)
  • Hyperactivity, short attention, and impulsivity
  • Self-injurious behavior (skin picking, head hitting or banging, eye-poking, or biting)
  • Sleep disturbances
  • History of developmental regression (esp. language and social skills)”

NDSS_logo

My son Nick, certainly hits most of the bullet points listed above.  It’s a unique mix having a child with a dual diagnosis of DS-ASD.  For many years, I felt isolated from the local DS support group because my child had many of those characteristics.  Eventually, I was put in contact with a small group of parents that also had children with DS-ASD.  This was a group within The National Association for Down Syndrome (NADS), here is Chicago.  Finding this group, made all the difference.  These parents were in the same boat, sharing similar experiences, struggles, and yes funny stories, that I could relate to.  In addition to local support groups, there are many online groups for DS-ASD on Facebook.

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During Autism Awareness Month, I would like to see the government and media focus   on more educational, behavioral supports and other treatment options.  What is going to happen to our kids when they age out of the school system?  There aren’t near enough employment opportunities, day programs or group homes for this rapidly growing population.  In addition, I’d like there to be an easier path to obtain funding through the government.

understanding

For the month of April, parents of a child with autism, or a dual diagnosis of DS-ASD, need understanding and support. Do you know a parent with a child who has autism?  Consider lending someone a hand, so they can run an errand.   We also need more compassion, and less judgment when we are out in public with our child.   And many of us, could use a good night’s sleep.

autism and sleep cartoon

You can also help by sharing information and stories, to raise awareness on social media. A better informed public will be more empathetic and supportive towards people with autism and a dual diagnosis of Down syndrome and autism.

That’s what is in my noggin this week. 🙂

~Teresa

Follow Nick:

Facebook and Pinterest- Down Syndrome With A Slice Of Autism

Instagram- #nickdsautism

Twitter- @tjunnerstall

Posted in Down syndrome, Down Syndrome Awareness

We Rocked the Socks!

We Rocked the Socks!

rock your socks

Just three weeks ago, I started a campaign centered around World Down Syndrome Day to raise awareness and funds for The National Association for Down Syndrome (NADS), which is our local support group here in Chicago.  I was approached by We Help Two, which sells these funky socks online.  With each pack purchased, We Help Two donates 60% to NADS.  On top of this, We Help Two also donates a pair of thermal socks which Nick and I will be taking to our local homeless shelter.  My son Nick is 23 years old, he has Down syndrome and autism.

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We have exciting news to share.  After just three weeks in this campaign, we raised $513.00 for The National Association for Down Syndrome!  In addition, 57 people will receive warm socks at our local homeless shelter. 🙂 🙂 🙂

Look who’s rocking the socks……

Nick with his respite workers 🙂

nick jodi kelsey socks

Me rocking the socks……

Me funky socks

Nick’s Aunt and Uncle in Texas 🙂

scott and laura socks

Nick’s Dad with Hormel Food Service group…

Hormel funky socks

My fitness class buddies 🙂

studio one socks

Nick’s respite caregiver, Miss R rocking the socks….

Miss R socks

Nick’s brother and his girlfriend….

hank socks

There’s still a few days left if you would like to order your 3 pack of funky socks, for $15 plus S&H click here:

Order Funky Socks:  https://my.wehelptwo.com/campaign?reset=1&id=373

A special thanks to We Help Two for a WONDERFUL campaign. It was super easy to set online, and the socks are shipped and at your door in two days!  I highly recommend this company.  We Help Two partners with schools, organizations, individuals and non-profits to make twice the difference.  They are truly making a difference by raising funds for organizations, and giving back to the community, with thermal sock donations to local homeless shelters.  What an impact they make, by helping two ways!

wehelptwo

For more information about We Help Two follow on Facebook and click here https:// www.wehelptwo.com

I want to thank everyone for being a part of this campaign, rocking those socks and supporting Down syndrome awareness by purchasing socks and promoting World Down Syndrome Day on social media. Stay tuned for a future blog, when Nick and I take the thermal socks to our local homeless shelter.

That’s what is in my noggin this week!

~Teresa 🙂

Follow Nick:

Down Syndrome With A Slice of Autism on Facebook and Pinterest

#nickdsautism on Instagram

@tjunnerstall on Twitter

 

 

 

 

 

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness

World Down Syndrome Day

world-down-syndrome-day

World Down Syndrome Day (WDSD), observed on 21 March every year, is a global awareness day which has been officially observed by the United Nations since 2012.  On this day, people with Down syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well-being of people with Down syndrome. Many of these events are recorded on the official World Down Syndrome Day website.  The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

DSAwarenessMagnet

WDSD 2017 Call to action is, #MyVoiceMyCommunity – Enabling people with Down syndrome to speak up, be heard and influence government policy and action, to be fully included in the community.  For more information visit: http://www.worlddownsyndromeday.org

My son Nick, is 23 years old and has Down syndrome and autism.  He participates fully in an adult day program, with enriching activities in the facility as well as the community, including volunteer jobs.

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We can all help to promote awareness on social media and spread a positive message for  people with Down syndrome.

Thank you to everyone who ordered funky socks from WeHelpTwo.  Our campaign helped to raise money for The National Association for Down Syndrome (NADS), http://www.nads.org, here in the Chicago area.  In addition, WeHelpTwo  is donating a pair of thermal socks for every pack we sold to our local homeless shelter.  The campaign ends at the end of this month.

warm-sock-photo

To order socks click here:  https://my.wehelptwo.com/campaign?=1&id=373

Nick and I can’t wait to see you all rock your funky socks, tomorrow.  Please post your pictures on our social media sites below!

Together, we can create a loud voice for better understanding, and advocating for rights, inclusion, and well-being for people having Down syndrome.  That’s what’s in my noggin this week.

wdsd2016

~Teresa 🙂

Follow Nick:

Down Syndrome With A Slice Of Autism on Facebook and Pinterest

#nickdsautism on Instagram

#tjunnerstall on Twitter

 

 

 

 

 

 

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

Follow Nick:

scan0016

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pintrest@Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

 

 

Posted in Autism, Down syndrome

Blog #95~ Do Just One Thing

Blog #95~ Do Just One Thing

It feels like a Monday morning.  I’m bouncing around from one thing to the next and getting off track in the process.  I started a load of laundry and took off upstairs to grab my sweaty gym clothes. Speaking of the gym, what playlist am I going to use for spin class tonight?  I paused at the bottom of the stairwell to rescue a drooping hydrangea flower which badly needed water. While upstairs I made the bed, grabbed some hangers and scooped up another basket of dirty clothes.  I heard a strange noise coming out of the laundry room.  The spin cycle wasn’t working on the trusty Kenmore, crap!  I sat down at the computer to schedule a service appointment, but the dryer buzzer went off.  I’d already hit the fluff cycle twice.  Stop and fold them now T!    I tried the spin cycle a few more times, but no go.  After wringing out each piece of clothing and putting them in the dryer, I sat back down to the computer.  What was I doing on it earlier?  I better pop another K-cup in, I have lost my focus.

K-cup

 The phone rang and on the other end was a message regarding problems with DHS (Department of Human Services) and an old timesheet from April 2013.  That’s just great.  What was I going to do on the computer?  Oh, that’s right I need to schedule a service appointment. Sometimes I wonder…….

Do I have ADHD?

ADHD

So, here is my to-do list for the week:

Finish resource list for NADS

Schedule NIU lecture and get respite for Nick

Fill out PACT survey

Deposit Nick’s stipend checks

Write article for NADS newsletter

Research essential oils and Bach Flower Remedy

Make Nick’s visual shopping list for fridge

Get eye exam (I am completely out of contacts)

Write thank you notes

Plant flowers

Over half of the list items are related to Nick and his special needs. Managing his adult affairs has become another part time job.  But, I refuse to freak out today.  I’m certain that there are lots of moms *running around like a chicken with their head cut off, much like me.

chicken with head cut off

I am going to follow my own advice from last week’s blog.  Don’t beat yourself up T.  Prioritize this list.  So I made the service appointment- Check!   As for the rest,  I’m going to take a breath, slow down and focus on just one thing.  That’s what is in my noggin this week!

~Teresa 🙂

*According to Wiki Answers:  A chicken with its head cut off tends to still run around aimlessly for several minutes after death. This is because the nerves in the body are still active for a short time. The saying “like a chicken with its head cut off” is a shortened version of “running around like a chicken with its head cut off”

 

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.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, Feeding, Personal Hygiene, Toileting

Blog #67~Dear Abby, Down syndrome and Autism Style

Blog #67~ Dear Abby, Down syndrome and Autism Style…

Dear Abby

Advice Columnist, Dear Abby 🙂

It’s comforting to know that as a parent of a child who has Down syndrome and autism I can click the mouse and find support online. When Nick was born 19 years ago, a nurse handed me a couple of brochures on Down syndrome.  That was it!   This is the vision sustained me after hearing of Nick’s diagnosis of Down syndrome. Thank you, Chris Burke…..Actor, advocate, icon, my rock star!

Chris Burke

Ten years later we would meet Chris in person at the National Down Syndrome Congress convention.  (For more information: http:// www. ndsccenter.org)

My older son, Hank with Chris Burke at the NDSC  Convention……

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There are several groups that I belong to on Facebook. (Just type in “Down syndrome and autism” in the search engine.) These parents are going through many adversities trying to get through the day and night with their kids.  Most are sleep deprived because their children are up all night turning on lights stimming, banging things against the wall, and opening and slamming doors.  I dedicate this week’s blog to these brave warriors who get up weary, reaching for the Visine and Advil to take on another day.

autism and sleep cartoon

Down syndrome and autism support groups are a safe haven to share war stories, tips, get advice, commiserate and laugh.  No one flinches when a parent writes about a walk on the local nature trail, and stopping to go back to their dawdling child.  The 11 year old stood there having just pooped in the middle of the path. What can I say but, it happens.   Topics last week were varied.  One mom needed help on how to explain and guide her daughter about getting her period.  I added a comment about a great book that tackles puberty and body privacy issues called:  “Taking Care of Myself,” by Mary Wrobel.  There were dozens of helpful tips from other parents who had daughters that had dealt with this issue.  Another parent had just given birth to a baby who has Down syndrome.  I was moved by all the support given to this new mom. Here are just a few of the many offered to her:

  • “Go home and bond and love your baby”
  • “Congratulations you have been blessed.”
  • “Get regular checkups and a heart echogram to rule out heart defects.”
  • “Low muscle tone may make it difficult to nurse your child but don’t give up.”
  • “Focus on the baby, not the Down syndrome.”
  • “Go to www.noahsdad.com it has great information presented positively.”
  • “Check out www.futureofdowns.com it has a lot of good information.”

It’s good to know that the struggles of feeding, toileting, hygiene, sleeping, sensory, gross and fine motor issues are felt by so many parents.   For a long time I was alone.  I pulled away from the Down syndrome support groups because I didn’t fit in.  Nick didn’t progress like the kids who just had Down syndrome.  After Nick’s diagnosis of autism I reached out to the Chicago based group, National Down Syndrome Association: http://www.nads.org.  Within NADS, there is a group is called “More than just Down syndrome.”  I found a new home here.  We have a unique bond because these parents get it!

We’ve have been through it all with Nick.  Our days are far from perfect. He still wakes up some nights but at least he isn’t banging the walls or turning on all the lights.  But some things have become easier as he has matured into an adult.  Just yesterday we gave him the best, most cooperative haircut ever!  Miracles do happen. 🙂

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As I wrote about in Blog #66, reaching out to a support group has helped me realize that I am not alone on this path. I’m not the only one who has bent down and had to clean up my child’s poop.  Bless these warrior parents for getting up and fighting the good fight!  That’s what is in my noggin this week!

~Teresa

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

Blog #66~Taking the Leap to a Support Group

Blog #66~Taking the Leap to a Support Group

I can’t make it there.  I have two boys that are 19 months apart under the age of two.”

“I have it under control.”

“We are okay.  There is no need to reach out to the local Down syndrome support group.”

“I have no energy to get out in the evening to make it to a meeting.”

Those are some of the excuses I have used.  It’s hard to take the leap to a support group.  Over the years friends and teachers have offered names and phone numbers of other parents whose children had Down syndrome.  I found it difficult to make those cold calls as well.  It’s not easy to open up and be vulnerable around people you don’t know.  Every parent handles the diagnosis of a child’s disability in their own way.

Eventually I did reach out to the local Down syndrome support group.  What I found was a community of individuals who had been on their own roller coaster of emotions.  They had dealt with uncertainty and doubt.  They had experienced anger, fear, worry, sorrow and guilt.  These parents offered encouragement and reassurance.  In addition, support groups can provide a forum for sharing feelings and concerns as well as providing information, advocacy and resources available.  See more information at: http://www.ndss.org/Resources/New-Expectant-Parents/Finding-Support/#sthash.dTRJb4bF.dpuf.

When we moved out to the east bay area outside San Francisco we didn’t know anyone.  The Down Syndrome Connection: http://www.dsconnection.org  provided resources, after school classes, social events and an invaluable kinship.

5 Year old Nick with his buddy playing in the Challenger Baseball League….

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Nick at the Down Syndrome Connection Picnic 🙂

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Before we relocated to the Chicago area twelve years ago, the local support group called National Down Syndrome Association, NADS: http:// www.nads.org,  provided a list of parents that lived in the area which we were planning to look for a home.  These parents were so open to answer my questions about school districts and gave me emotional support even before the moving truck had pulled up to our house.  NADS continues to provide services and has been instrumental in making a difference with Nick having the second diagnosis of autism.  Within NADS, there is also a sub-group called “Down syndrome and More,” which holds retreats for families dealing with a second diagnosis.

Nick at the NADS Retreat….. 🙂

Nick 2 (2)

Music Therapy at the NADS Retreat…..

Nick beatnick

These days there are multitudes of online support groups and Facebook pages to reach out to.  There are several Facebook groups specific to Down syndrome and autism.  Be sure and check out my resource page for more.  As a parent I have gone through phases where I thought I had things under control.  When Nick’s body was raging with hormones during puberty he had massive meltdowns.  After talking to a few parents whose children had Down syndrome also had autism, I realized the need to get help.  I also quit being ashamed that I was a bad parent that couldn’t control my child.  By reaching out to the support groups for assistance, I found out that I was not alone.  It has made all the difference.

Help is out there, sometimes you just have to take a breath and make the leap.  That’s what is in my noggin this week.

~Teresa

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

Blog #54~Mom Helpline

Blog #54~Mom Helpline

What did I want for Mother’s Day?  ……………………. Just the sound of crickets.…..

I applaud the moms who enjoy breakfast in bed served by their kids.  I am not there anymore.  Really all I want is a little peace.  For me, it is having the luxury to take some time to do simple errands. Not rushing at a mad pace. It’s a gift just knowing that someone is watching Nick so I don’t have to bust my ass to get home.   And so I did.  I took my time after teaching two spin classes. I drove out of work slowly taking a chill pace towards Oswego.  I  stopped off at Ulta, Kohls, Target.  Oh how I love you three amigos!  Ladies, you are with me here, right? 🙂

So I got my wish, to breathe, stretch my arms out and enjoy doing what I like.  I also received a nice handmade gift from Nick.

pinecone birdfeeder

It lasted less than a day hanging on the shepherds hook.  A menacing squirrel plucked it off and darted across the yard holding it in his mouth.  Al got my favorites,  Yankee Candles and a new fountain for the deck.  That’s how I get my Zen on.

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While Nick showers me with little kisses, his older brother is more understated. Hank quietly posted a message on Facebook, “Happy Mother’s Day, Madre!  You’re the best.”

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Later he emerged out of the shower clean shaven and said, “This is your mother’s day gift.”  He knows exactly how to win his Madre’s heart.

While I was out driving yesterday and I pondered on what to write about for this week.  How is being a mom of a child with special needs different?  The images of my all my fellow warrior moms came to mind.  The path we were given is worn with sleeplessness that extends for years.  The basic milestones like eating solid foods, walking, talking, and potty training take longer to reach.  Some of these may never be met. The ones that do get met are sweet and savory.  Warrior moms become experts on their child’s diagnosis and IEP’s (Individualized Education Plans.)  They learn a whole new vocabulary of words from doctors, educators, speech, occupational and physical therapists.  They juggle schedules to all of these therapies and carve out time to attend conferences and seminars to learn more about how to improve the quality of life for their child. They become advocates for their child and help others who follow behind them.  Those with children who have behavior problems have to shift gears during a mid laundry fold and clean up a splatter or cut a meltdown off at the pass.

This is just one of many things Nick has dumped out.  For the full list check out Blog #3~Getting Your Goat, located in the April 2012 Archives!

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Sometimes the meltdowns just happen and the warrior mom has to maintain patience while their child is hitting, biting, pinching, kicking and destroying everything in their path.  It’s not all doom and gloom.  Having a son like Nick who has Down syndrome and autism can also bring sweetness, innocence and unconditional love.  That is what keeps me fueled as I take a breath and get ready for another day.

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What can you do to help a mom with a child who has special needs?  It means a great deal when I get a message, text or card.  Knowing that someone is thinking about you can really make a person’s day.  Offer to babysit or help a mom find respite care. “The Care.Com Team” provides a list of caregivers who have experience working with special needs children. Watch for signs that a family is becoming to isolated.  Sometimes being in the trenches, we might not realize how bad things have gotten. During the height of Nick’s puberty period, my in-laws (Jim and Theresa) saw that we were in over our heads. They found some resources and parents to help us find a new path for dealing with the difficult problems we were having.  Reaching out and finding support is essential.   This can be through a local group like NADS (National Association for Down Syndrome).  There are many groups online and through Facebook that I have found to be helpful such as “MyAutismTeam,” “Circle of Moms,” and “Mom2Mom” which has a hotline 1-877-914-Mom2.  There are many more listed under my resource page.

Today there is no school so I wasn’t sure how well I would be able to concentrate to do this piece. Nick was up earlier playing his iPod loudly and pushing buttons as I tried to sleep with one eye open. Over an hour later he crawled in bed next to me.  Surprisingly, he is taking a page out of his brother’s book, still sleeping in now. 🙂

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It’s 11:00am and all I hear is the dull hum of the refrigerator and the sound of my fingers tapping on the keyboard.  No iPod or Thomas the Tank Engine blaring, no water faucets running full blast, no phone intercom or microwave buttons being pushed.  Just crickets…………

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Cheers to all you moms out there and may your Mother’s Day wishes come true. That’s what is in my noggin this week.

~Teresa