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, Autism Safety and Wandering, Down syndrome

Blog #142~Elopement and Autism

Blog #142~Elopement and Autism

Have you ever lost your child?  It’s the worst feeling ever.  April is Autism Awareness Month, it is essential to put supports in place to prevent your child from wandering off.

autism elopement

My son Nick is 22 years old and has Down syndrome and autism.  There have been a few times where he has taken off.  Since then, I have put supports in place and done some research on more precautions to take.  I found an excellent website called AWAARE which stands for Autism Wandering Awareness Alerts Response Educationwww.awaare.org.  This site has a comprehensive list of tips, materials and tools.  Take action now to protect your child…….

Secure your home

Install secure deadbolts, home security systems, install inexpensive battery operated alarms on door and window to alert when opened. Place hook and eye locks on all doors above your child’s reach.  Fence in the yard and put visuals like stop signs to doors.

photo (115)

Consider an ID Bracelet

Medic Alert, www.medicalert.org  is what Nick wears and it stays on him firm.  Another popular bracelet is called Project Lifesaver, http://www.projectlifesaver.org

photo (116)

Teach your child to swim

A large percentage of the headlines for wandering and autism end tragically because of drowning deaths.  Check your local YMCA or special recreation association for swim lessons.

autism missing pic

 

Alert your neighbors

Make a simple handout with your name, address, phone number, information about your child (autism, non-verbal etc….) and include a photograph of your child.   Ask them to call you immediately if they see your child outside of your home.

Alert First Responders

Provide the local police and fire stations with key information before an incident occurs.  See the AWAARE website given above for printable handouts.  There is also a free Big Red Safety Toolkit with free downloads on wandering and prevention.

Consider A Monitoring App

*iPhone Baby Monitor App

*Kids ID App

*KidStatz App

kids id phone app

Consider a GPS Locater Tracking Device:

Project Lifesaver (https://www.projectlivesaver.ort)

Lo Jack Safety Net (https://www.safetynetbylojack.com)

These locaters range from $125.00-$250.00; monthly monitoring fees vary:

*Angel Sense GPS Device (https://www.angelsense.com)

*Amber Alert GPS (https://www.amberalertgps.com)

*Trax Personal GPS Tracker (https://www.traxfamily.com)

Being prepared and proactive is vital for a child who is an eloper and may bolt at anytime.  It will also help you as a parent to feel more confident in the safety of your child.  That’s what is in my noggin this week!

~Teresa

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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

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Posted in Autism, Down syndrome

April is Autism Awareness Month

April is Autism Awareness Month

autism awareness 2016

April is “Autism Awareness Month“.  I am quite aware of autism every day of the year.  My son Nick, is 22.  He has Down syndrome and autism.  He requires constant supervision 24/7, 365 days of the year.  There is some funding through the state which helps pay for his adult day program and respite care.  In addition, he receives Supplemental Security Income monthly.  But this doesn’t come close to covering the costs. Autism is the fastest growing developmental disorder, yet most under funded.

Putting a ribbon on the car bumper is not going to do enough to help families living with autism.

autism ribbon

My hope is for more acceptance, compassion, research, funding and programs to support families living with autism.  And, we need more “family” bathrooms to be accessible in public facilities.  Nick can’t go into the men’s rest room by himself.  It would not be safe for him to go alone.  Not to mention that he would flush the toilet repeatedly, then run every single faucet full blast.

Autism statistics in 2000 were 1 in 150.  By 2010 it was 1 in 68.  Autism is not going anywhere.  In fact, people with autism are growing up and aging out of the school system like my son, Nick.  Families with autism need more support.  We can’t do it alone.  That’s what is in my noggin this week.

~Teresa

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