Posted in Autism, Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Education and Special Needs, Parenting Special Needs

Blog #230~Book Review: Scoot Over and Make Some Room

Blog #230~ Book Review: Scoot Over and Make Some Room 

My recent summer read– Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs, by author and Instagram star, Heather Avis is a must read. She is the mother of 3 adopted children, two with Down’s syndrome and one of color.  Here is one review from her book that speaks volumes:

“In a world of divisions and margins, those who act, look, and grow a little differently are all too often shoved aside. Scoot Over and Make Some Room is part inspiring narrative and part encouraging challenge for us all to listen and learn from those we’re prone to ignore.”

Each chapter in the book Scoot Over and Make Some Room extends the challenge to make room for not only individuals with Down syndrome but way beyond to all individuals with different abilities, ethnicities, race, viewpoints and perspectives. Heather’s book is filled with humorous stories, challenges and lessons she has learned raising her 3 children, navigating IEP’s, inclusion and acceptance. But this book dives down much further, by challenging the reader to look into their own lives and broaden your understanding and compassion towards people who may be different from you.

My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). In my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism @ https://amzn.to/2W3Un6X  there are many stories about times where I would brace myself in public. Countless times I would apologize for my son’s seemingly inappropriate behavior, and yes like Heather have a moment where the pants have gone down, 🙂

Heather tells about the “pants down in the park” episode that was highly inappropriate (and a one-time occurrence) with her daughter Macyn. I can attest to the need to be on high alert and cringing at times. Macyn is a very spirited and outgoing girl who likes to engage with strangers by waving and sometimes asking “WHATCHA NAME?” This happened once at a hip LA restaurant. This raises a good question: Is this behavior inappropriate or just different than the social norm? Why are we so fearful to interact with individuals who have an intellectual or developmental disability? Often it is fear of the unknown and being uncomfortable around someone who may speak or act differently.

Heather writes this powerful message in her book:

“We fear the unknown. And unfortunately, until we create space for people with physical and intellectual disabilities to show up exactly as they are and give them permission to interrupt our social norms, they will continue to be unknown and we will continue to be fearful,”–Heather Avis

What a profound message this is to society and lesson about acceptance. Personally, I feel that the world could use more kind interactions like saying “hi” and “WHATCHA NAME.”  Obviously, we can all agree that “pants down in the park” is an inappropriate behavior. But as Heather writes in part:

“all of us have a responsibility to shift the way we react when faced with uncomfortable social situations. All of need to scoot over and make some room for people to respond in a way we’re not use to.”–Heather Avis

One of my favorite parts of this book is the chapter entitled “Make room for the Wildflowers.” Much of what we do in life is like a garden– planted in nice, neat rows. Take for instance inside school classrooms where the desks are all lined and in sync. Is there any space for the wildflowers to grow in these tidy rows? This metaphor opens up the dialog about inclusion and different abilities working alongside in the same classroom. Can we scoot over and make some room to let the wildflowers grow amongst the seamless rows and see the value of inclusion and all abilities?  I can speak from experience that my son, Nick brought great value and taught lessons of patience, compassion and unconditional love to his peers while in the inclusion classroom setting. He continues to do so as a young adult with his interactions out in the community and at his adult developmental day training program.

There is so much more to this book and you will have to read it to find out for yourself. Scoot Over and Make Some Room is a call to action to shout the worth of people who are left out and misunderstood. Every parent, extended family member, physician, educator, pastor and others will gain a deeper understanding of how to do a better job to adjust, sit and listen in order to learn how to find a way to make room for everyone to be valued, accepted and included in our society.

That’s what is in my noggin this week.

 ~Teresa 🙂

Follow Nick:

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Twitter @tjunnerstall

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Heather Avis writes from the heart about all the things she wishes the every day person knew about inclusion. This book applies to teachers, parents, siblings and simply everyone who wants to change the way we see inclusion in the world around us.

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs, Self-care for special needs parents

Blog #228~DS-ASD: Parenting During the COVID-19 Crisis

Blog #228~DS-ASD: Parenting During the COVID-19 Crisis

How’s everyone doing at home during this COVID-19 Crisis? The new normal of staying at home has it’s challenges, especially when you have a child with a dual diagnosis of Down syndrome and autism (DS-ASD). My son Nick is 26 years old and usually attends a daily adult developmental day training program. The structure and routine provides meaning to his life. But the Coronavirus has taken that away from him and all of us. So now what? I wish that I could wave a magic wand and show you how to navigate through this quarantine with your kids. I can only offer my perspective on parenting a child with DS-ASD this week. I’ll keep it short, because I suspect we are all overwhelmed.

Last week’s blog provided daily independent living skills ideas to work on at home with your child. Nick did great helping out and I posted daily videos of him in action on our social media sites. We will continue these living skills and also do some activity bins: Home School Activity Ideas: https://nickspecialneeds.com/tag/puzzle-and-mathcing-ideas-for-home/

I think it’s important to cut ourselves some slack right now. This is uncharted territory for all of us. 

Here are 5 things I am keeping in my noggin this week, to help navigate thru the COVID-19 Crisis:

*1-Remember to respond and not react when your child gets frustrated, bored and overwelmed. One of the lessons I offer in my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (click here to order https://amzn.to/2W3Un6X ) is the following: “Remain calm and matter of fact. You must be a constant in a sea of uncertainty”

*2-Do what you can and don’t beat yourself up. This isn’t the time to put pressure on yourself to play all the roles of a teacher, OT, PT, speech and behavior therapist. Take this opportunity to have fun with your kids and naturally build in learning and interaction around activities that they enjoy. We’ve been turning off Fox News and CNN and instead, snuggling under a blanket and watching old movies that Nick and his older brother Hank enjoyed growing up.

*3-Get some exercise! As a 35 year fitness professional I promise it will boost your immune system and elevate your mood. Go Noodle learning stations has some fun, free movement videos you can do with your kids: https://www.gonoodle.com

*4-I keep reminding myself that we are all in this together and that gives me comfort. It also helps me to tap into a memory that I’ve personally suffered through a lot worse. In August of 1983, Hurricane Alicia left us paralyzed and without electricity for 2 long, HOT weeks down in Houston, Texas. Oh, and thank goodness for humor and all the funny memes being shared on social media 🙂 

*5-What am I doing today to make things better for myself and others? 🙂

daily quarantine questions

So, these are the 5 things I am keeping in mind to navigate what appears to be a marathon of social isolation during the Coronavirus crisis. I wish each of you wellness and peace in your homes with your family and plenty of toilet paper for all. We can do this, we’re all in this together!

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

~Teresa 

Follow on Social Media:

Facebook, Instagram and Pinterest at Down Syndrome With a Slice of Autism

Twitter @tjunnerstall

LOGO TRANSPARENCY (5)

 

 

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs, Self-care for special needs parents

Ditch the New Year’s Resolutions:Here’s a Better Idea!

Ditch the New Year’s Resolutions: Here’s a Better Idea!

2020 plan

Happy New Year! It’s time to clear the decks and start fresh.🙂 How many times have you made a new year’s resolution and failed to keep it? As a 35+year fitness professional and mother of a son with special needs (DS-ASD), here is my advice: Ditch the old school resolutions and try a different approach!

Here’s what I’ve got for you to get started:

*Great self-care tips and easy ways to build in healthy habits.

*Quick, easy and  practical ways to get back into fitness.

*Simple approaches to help your child with special needs to gain independent living skills.

Click on this link to read how to make a new plan for 2020: https://nickspecialneeds.com/tag/ditch-the-new-years-resolutions/

Let’s do this, 2020 is going to be a great year! That’s what is in my noggin this week.

~Teresa 🙂

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Instagram @nickdsautism

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs

Back to School Tips for Special Needs Parents

Back to School Tips for Special Needs Parents

Back to school helpful tips

It’s the time of year when parents get busy preparing their kids for the new school year. There is added stress and things to consider when you have a child who has intellectual and developmental disabilities. You can help your child by planning ahead, getting organized and putting visual supports in place before school starts.

Here are 5 tips to ensure a smooth start to the new school year for your child with special needs: https://nickspecialneeds.com/tag/haircuts-and-special-needs-child/

Navigating the new school year, which may include changes in staff, venues and classmates can be challenging. But with careful preparation, parents can guide their child to have a successful start, with less anxiety and more confidence!

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

~Teresa 

Follow Nick:

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Instagram @nickdsautism

Twitter @tjunnerstall

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #218~Special Needs Parents,What We Need From a Friend

Blog #218~Special Needs Parents, What We Need From A Friend

Parenting a child with special needs can be lonely.  Having a support system is crucial to maintain a positive well-being.  Uncomfortable situations, surrounded by raising a child with special needs, make it difficult for people to know how to help as a friend.  My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.  My close friends keep me sane, make me laugh and understand what I go through.  As a parent of a child with special needs, here is what we need from a friend.

Friendship Beatles

We need a friend to understand.  Parenting a child with special needs is a constant battle with schools, doctors, insurance companies, and daily behavior challenges at home.  Add sleep deprivation to the mix, and you have one cranky parent at times.  Imagine starting your day off, washing sheets and cleaning excrement off the wall and carpet of your child’s bedroom.  In this code brown emergency, your child goes downstairs and dumps out your freshly brewed coffee all over the kitchen floor.  This is a page out of my story some 15 years ago.  It’s the story of so many parents dealing a child who has Down syndrome and/or autism.  We rely on our friends to listen without judgement, and to understand the pressure and challenges we deal with everyday.  The best of friends, roll up their sleeves and pitch in.

hands and heart pic

One vacation in New Braunfels, Texas, my son got hold of my make up bag and made a huge Picasso mess on the bed sheets in the rental house we shared with friends.  My friend Sally, poured us a glass of wine, and jumped right in scrubbing the stains with me as we laughed at the absurdity of the moment.

A good friend, says “Tell me what I can do” instead of “Call me if you need help”.

As special needs parents, we need our friends to listen and understand that sometimes our world is so complicated, that we may have to decline invitations or cancel at the last-minute.  But please, don’t stop inviting us, sometimes we just need more lead time in order to secure a caregiver for our child.  Other times, our child may be having a bad day or meltdown and we just can’t get out of the house.

babysitter for autism

As a parent of a child with special needs, we also crave normal conversations.  Sometimes we are stuck at home, with our kids.  Please, don’t worry so much about us being too busy.  A simple text goes a long way, as does dropping by for a cup of coffee or glass of wine.  Honestly, when I can focus on my friends problems and help them out, it makes me forget my own and feel much better.  I treasure the moments with my friends, when we can dish about everyday life and share a few laughs together.  Every Thursday, we power walking together.  We vent, cuss, laugh and have normal girl talk.  It restores our sanity! 🙂  

friends therapy

A parent of a child with special needs, relies on friends that stand with us!  They listen, understand and share together with us.  We can’t do it alone, and our friendships sustain and keep us strong.  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, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #207~Special Needs Parents: Coping When Life Gets Tough

 a Blog #207~Special Needs Parents: Coping When Life Gets Tough

Let’s face it, being a parent is exhausting at times.  When you have a child with special needs, it’s amplified.  Sometimes you just can’t catch a break.  You have to walk on eggshells, and keep your cool, so your child doesn’t have a meltdown.  The physical needs your child may have can take its toll, zapping your energy levels each day and night.  Autism and sleep disorders go hand in hand. Endless nights of interrupted sleep will beat you down.  My son Nick is 24 years old, and has Down syndrome and autism.  I’ve got many years under my belt, of taking care of his needs.  I can hold it together pretty well and keep my patience in tact.  Believe me, Nick does try my patience daily.  But every once in a while it gets to be too much, especially when sleep is disrupted.

mombie

So how do you find ways to catch a break and re-charge?  I thought a lot about this over the weekend.  There are times in life where you start to get your footing, but the next thing you know, a few more hurdles block your path.  In the worst of times, when my son was going through puberty and having multitudes of meltdowns, I questioned how I was going to survive.

I repeated this mantra to myself……

winston churhill quote

Here are 7 things to keep in mind which will help when you feel stressed out…..

  1. It’s totally NORMAL to feel overwhelmed.
  2. When you do feel stressed out, seek BALANCE and prioritize what MUST be done and what can wait.
  3. Stop feeling GUILTY.
  4. Give yourself a BREAK, even if it’s a mini break to keep you at your best both emotionally and physically.
  5. Ask for HELP from family, sitters and respite caregivers. You can’t do it alone.  Delegate household chores to all family members.
  6. CONNECT with support groups who better understand what you are dealing with on a daily basis.  Being a parent of a child with special needs can be lonely.  But you know what, you are NOT ALONE.
  7. Keep GRATITUDE in your heart.  Every day look for the blessings.  The good stuff will keep your focus positive.

This weekend was very busy, and my usual Saturday catch up routine was interrupted.  That evening I was looking for a clean pair of underwear for my son.  I dug through 3 clean laundry baskets that had yet to be put away.  Not one single pair could be found.  It was late, I was tired, and it was all too much.  While Nick was in the shower, I went into the closet and started yelling, “T, you suck.”  And yes, the swear words were flying.  Nick ended up in a pair of his Dad’s boxer briefs that were on the baggy side.  I spoke into the Amazon Echo, “Alexa, put F-ing underwear on the shopping list!”  Alexa acknowledged the request, without using the expletive, as she is polite that way.

The next day, Nick went to brunch with Kelsey, his respite caregiver.  I took my own advice, and put myself first.  I also took a moment to be grateful that Nick was fully toilet trained (no easy feat), and able to wear underwear.  Before making a Wal-Mart run for groceries and F-ing underwear, I headed over to my happy place, DSW Shoes. I was loaded down with preferred customer coupons and a gift card that I got for Mother’s Day.  It was only a twenty-minute mini break, but it did me a world of good!  Oh and I came out treating myself with two new pair of cute sandals. 🙂

Being a parent of a child with special needs carries a unique set of responsibilities that can be overwhelming.  Know that you are not alone, and that it’s essential to give yourself a break without guilt.  Even in the darkest days and nights, things will get better.

So I leave you with this final mantra when you are taking on what seems to be the impossible…..

breathe chapter quote

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