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

Blog #228~DS-ASD and Managing Stress as a Parent

Blog #228~DS-ASD and Managing Stress as a Parent

Let’s face it, parenting is stressful with all the demands that are draining on a daily basis.  Raising a child with special needs compounds this even further.  A child with an intellectual or developmental disability such as autism, Down syndrome or a dual diagnosis of Down syndrome and autism (DS-ASD) has even more demands, with living skills, communication and behavior.  These additional needs means the parent has to work even harder.  This can drain parents both physically and emotionally.  I have been dealing with this stress for 24 years, as my son Nick has a dual diagnosis of DS-ASD.  Here is what the stress looks like for a parent of a child with special needs, and some coping mechanisms to combat it.

stress ball

So what does stress look like for parents raising a child with special needs?  Yes, there are the usual demands of running the household, carpools, extra curricular activities and homework of the child and any siblings, but there is much more.  There are often additional therapy and medical appointments on the calendar each week.  Balancing this with all the other activities can be tricky, with someone feeling short-changed in the family.  As I mentioned earlier, a child with special needs may need additional help with daily living skills, communication and behavior management.  If a child is non-verbal or limited in speech, the parent may have to play the guessing game on what the child needs. Deficits in communication skills can often lead to behavior problems.  Maladaptive behaviors may prevent the family from doing activities, attending outside family gatherings and special events together.  One parent may opt to stay home with the child, which over time, may impact the marital relationship.  This also creates a sense of isolation.  All of this can lead to feelings of guilt by the parent, which is one of the biggest internal stressors.

So, how can you manage stress as a parent of a child with DS-ASD or any other intellectual or developmental disability?  Ideally, a parent would schedule a vacation or spa weekend getaway, right?  But what if you don’t have the time or resources for such an elaborate indulgence?

spa getaway

Stress Management in my opinion, begins with mindfulness.  Carving out a few minutes for yourself is key.  Dedicate a time where you can meditate.  Free your mind of all distractions and breathe deeply.  This will allow the heart rate and blood pressure to lower and reduce stress.  Last week, I had lunch with my niece, who recently returned from a spiritual cycling journey and yoga retreat overseas.  We talked about the concept of truly being present in the moment.  The focus can be as simple as being aware of your senses……..

Step outside notice how the sun and warm breeze feel on your face. 

Quiet yourself and enjoy the texture and taste of each bit while you eat.  Take in the aroma and softness against your fingers, as you bite into the pita bread.

Listen and feel how the snow crunches under your feet, take in the cool air and watch as you exhale, seeing your breath rise up into the blue sky.

Sit silently, maybe with your child or pet, feel the softness and listen to your breaths.  Do nothing,  just be as one.

Put on your favorite music.  Focus on the beat, various musical instruments, vocal tones, and harmonies.  Note the meaning of the lyrics, and how it all  feels to your body, mind and soul.

Mindfulness is simply paying attention to the moment that you are in right now, and freeing yourself from worry.  Spending time in the present and focusing on your senses, will allow you to feel less tense.

Pairing mindfulness with gratitude cancels out negative thoughts and worries.  Some days can be challenging and exhausting.  In those times, remind yourself that there is always something or someone to be grateful for.  Showing gratitude can boost morale for  yourself and others.

Taking time to get physical activity in daily can greatly reduces the effects that stress can take on the body.  Even small bursts of exercise, taking a fitness class or a walk around the block can make a difference on how you feel.

It is also important to reach out and share what is going on with friends, family and support groups.  Isolation can be debilitating.  Sharing your struggles can give you a fresh perspective.  There is much to be gained in finding a support group of like-minded individuals who are on a similar path.  In the DS-ASD world, we share success stories, challenges of our child’s delays, and difficult behaviors.  We offer suggestions on how to find a better way to manage the unique challenges associated with our kids and applaud the milestones they hit.  When you share your struggles, (and do so with a dose of humor), you don’t feel alone anymore.  That can be a powerful thing.

Reducing stress doesn’t have to be a big, fancy trip or getaway.  Taking time to exercise mindfulness, gratitude, doing some type of physical activity, and opening yourself up to others, are all simple ways to reduce anxiety.  Allowing people to come in your life for support, will help make difficulties more manageable. Most of all, it’s essential to take some time and find ways to relax your mind. This allows you to re-charge and lessen the degree to which stress can affect the body and mind.

let yourself rest

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

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest at 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 #174~ Mom,Take Care of Yourself!

Blog #174~Mom, Take Care of Yourself!

A message to all of you moms out there in the trenches, up to your elbows in laundry, cooking, cleaning and wiping up snot, or changing countless dirty diapers…….

Pour Cup

Trying to be perfect and do everything yourself doesn’t work.  Sometimes the items you put on your to-do list get bumped to the next week or month.  Life gets in the way, especially if you are raising a child with special needs.  My son Nick is 23 years old, and has Down syndrome and autism.  There was a time when I would beat myself up.  I felt tremendous guilt about not doing enough for him, and the rest of my family.

The internal dialog was something like this…..

Nick’s not sitting up yet, I need to do more physical therapy exercises at home.   I shouldn’t be sticking in a Barney video all the time.  He should be potty trained by now, what am I doing wrong?  I don’t have enough time to spend with my older son.  There aren’t enough hours in the day to get things done around the house. 

*This was the first lesson I learned.  Stop trying to be perfect and let go of the guilt….

There’s nothing wrong with having your own pity party every once in a while, and have  a good cry.  But self-pity and guilt can eat away at your psyche and rob you of happiness.  It is at these junctures, that I learned to evaluate the challenges in front of me.  Prioritize what is urgent and act upon them.  The rest of the expectations, were often things that I put upon myself, causing more unwanted stress in my life.  Don’t get me wrong, the guilt still pops up on occasion.  But it doesn’t consume me anymore.

*Which leads me to the second lesson I’ve learned…….

Make Time for Yourself

I’m no good to my family if I can’t let it go, and take care of myself.  What makes you happy?  Do it, get back to doing it!  Carve out niches whether it’s taking a walk outdoors, meeting a friend for coffee, reading a book, or getting back to a hobby you left behind once the kids were born.  Slow your pace during these times and savor the moments when you make time for yourself.

*The third thing that I’ve learned, combines the two above.  It is the importance of finding balance…..

Balance

Life can be crazy with kids, running them around to therapy/doctor appointments, sports programs, and enrichment classes.  On top of those Uber duties, there is running a household and if you have a job outside the home, the pace can be non-stop.  A car can’t run from zero to sixty mph, without shutting off the engine and stopping to refuel.  What are you doing on your fuel stops?  When you turn that key and the motor stops, think about going to a place that gives you a simple pleasure.

On my pit stops, I tend to grab the remote to shut down, kick back and do nothing.  Sometimes it’s a binge watch of Fixer Upper on HGTV, other times it’s a show on The Bravo Channel (thank you Andy Cohen).  It’s a time to de-compress, relax and escape.  This “do nothing” time allows me to re-fuel. Striking a balance, keeps you on an even keel.

As Mother’s Day approaches, my hope is for all moms to: 

*Let go of the guilt

*Make time for yourself

*Find balance and resist the urge to get everything done

Take care of yourself, you can’t pour from an empty cup!  When you find the balance, the happiness returns and there is more peace and fulfillment in your life as a mom.

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, Uncategorized

Blog #141~Managing Stress as a Special Needs Parent

Blog #141~Managing Stress as a Special Needs Parent

Let’s face it, parenting is stressful.  Being a parent of a special needs child adds even more stress.  It’s a constant state of being on call 24/7, 365 days of the year.  I have been in this state for 22 years with my son Nick, who has Down syndrome and autism.

This weekend, we attended the National Association for Down Syndrome (NADS) retreat.  It is an opportunity for Nick to have fun swimming, playing and doing music therapy.  We’ve been going to this twice a year for the past 11 years.  It is a great group of folks who get it.  You see we don’t fit in to either the Down syndrome support groups or the autism groups.  But at this retreat, we all can openly discuss the unique problems of raising a child with a dual diagnosis of Down syndrome and autism, in addition to  behaviors associated with ADD,ADHD and more.

Nick 2 (2)

At the NADS Down Syndrome and More retreat http://www.nads.org/, Dr. Louis Weiss did a presentation for the parents about taking care of yourself.

He identified areas in our lives that we nurture or neglect:

*Health (mental/physical)

*Relationships (partner, kids, family, friends)

*Work

*Play

Dr. Weiss emphasized the importance of finding your oasis.  How do you recharge your batteries?  What do you do to relax?

relax frog

It is critical to avoid the traps of maladaptive coping for stress with such things as excessive use of drugs/alcohol, sleeping, overeating, withdrawing/avoiding, becoming over-controlling or compulsive (too much screen time or games like candy crush).

Instead, use adaptive coping strategies to restore calm, get centered and refuel.

relax

Adaptive Coping Strategies:

*Mindfulness Practice

*Meditation

*Prayer

*Exercise, eat well, get enough sleep

*Journaling

*Hobbies (gardening, reading, sports, knitting,etc)

*Use organizing techniques for schedules, tasks, etc.

*Support groups (both in person and online)

*Utilize community resources

*Delegate responsibilities and rebalancing the division of tasks

*Setting limits and sticking to them

*Asking for help. Identify sources of support, including professionals.

Taking care of yourself means taking time for you, and doing so without guilt.  Just like the flight attendants demonstrate, put that oxygen mask on yourself first before you place the one on your child.  And you will both breathe a little easier.

oxygen mask

That’s what is in my noggin this week.

~Teresa

Follow Nick:

Facebook @Down Syndrome With A Slice Of Autism

pintrest@Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism