Tag Archives: autism

Living and thriving outside the lines

RAD, FAS, ADHD, Autism, PTSD*

Most of these words and what they represent strike fear and grief into the hearts of parents–and for good reason. I’m not going to lie, parenting a child who wears these labels and who comes from a background of complex trauma and abuse is anything but easy and “typical.” In fact, it’s downright soul-crushing and exhausting a lot of the time.  Most of society doesn’t understand the unique needs of such a child. His needs are “invisible” and sometimes hard to explain. We’re not a family with a special needs child, we are a special needs family. It’s an isolating and scary road at times with little support.  Fortunately, we have wonderful friends who get it and who also share similar journeys.

What one would deem a “normal” life is gone. Simple outings, gatherings, school days or even car rides don’t exist. Sometimes life isn’t lived, but merely survived.

But I’d also be doing you all a great disservice if I didn’t tell you about all the good times too. Yes, they can be harder to come by, but they do exist. It takes a lot of hard work and planning, and a little luck and much prayer. And the triumphs are so wonderful…and are savored much more than words could explain.

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Deciding to live beyond the labels and the borders they sometimes create in our society is also a tough road to navigate. But that’s what we’re doing. We’re blowing away the labels and the lines in the sand. I hope to show you how we sometimes succeed at this and sometimes fail, but that you must never stop trying. After all, we still believe adventure is for all.  I hope that I can convince others who feel like they are trapped at home caring for a child with complex needs that they can live a full and exciting life in this great big world of ours. So come along and we’ll try together….

 

canoeing

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*RAD: Reactive Attachment Disorder

“Reactive Attachment Disorder (RAD) is a complex psychiatric illness that can affect young children. It is characterized by serious problems in emotional attachments to others. RAD usually presents by age 5, but a parent, caregiver or physician may notice that a child has problems with emotional attachment by their first birthday. Often, a parent brings an infant or very young child to the doctor with one or more of the following concerns:

  • severe colic and/or feeding difficulties
  • failure to gain weight
  • detached and unresponsive behavior
  • difficulty being comforted
  • preoccupied and/or defiant behavior
  • inhibition or hesitancy in social interactions
  • disinhibition orinappropriate familiarity or closeness with strangers.

The physical, emotional and social problems associated withRAD may persist as the child grows older.

Most children with Reactive Attachment Disorder have had severe problems or disruptions in their early relationships. Many have been physically or emotionally abused or neglected. Some have experienced inadequate care in an institutional setting or other out-of-home placement such as a hospital, residential program, foster care or orphanage. Others have had multiple or traumatic losses or changes in their primary caregiver. The exact cause of Reactive Attachment Disorder is not known although research suggests that inadequate care-giving is a possible cause.” via the American Academy of Children and Adolescent Psychiatry

*FAS: Fetal Alcohol Syndrome

“FAS represents the severe end of the FASD spectrum. Fetal death is the most extreme outcome from drinking alcohol during pregnancy. People with FAS might have abnormal facial features, growth problems, and central nervous system (CNS) problems. People with FAS can have problems with learning, memory, attention span, communication, vision, or hearing. They might have a mix of these problems. People with FAS often have a hard time in school and trouble getting along with others.” via the CDC

*ADHD: Attention Deficit Hyperactivity Disorder

*PTSD: Post Traumatic Stress Disorder

Merry Christmas Never Sounded So Sweet

This will be Big Brother’s 2nd Christmas. And even though he is almost 6 years old, this is the first time he has been able to actually sing a Christmas song. Nothing sweeter to my ears than this precious child who we were told would never talk! #miracleshappen

I dare you to watch and not smile…

My Babies, My Life

I’ll admit it.  My blog has been quite boring lately.  I’ve been trying to squeeze out posts that are important to me, but then everything else gets left sitting around in my head, destined to be forgotten in the shuffle of life.  And reading other blogs?  Oh I’m so very, very behind.  I love reading and commenting on other blogs but I’m afraid all of that has taken a back seat to the happenings in my “real life.”

So what exactly have I been doing lately?  Well, I  have begun leading an advocacy group in my community that will work to create social change through interactions with members of congress and the media.  It’s a lot of work, but something I am deeply passionate about.  I’ll have some more exciting details to share about that soon.

But we’re also knee-deep in trauma/adoption/autism issues with Big Brother.  We are finally, however, finding the light at the end of the tunnel and are finally in a good place.  For the last couple of months, things were pretty rough.  Flashbacks, regression and constant violent outbursts dominated our days and nights. I’m not in a place right now to even begin to put my thoughts into words about all that has transpired, but I will at some point in time.

It’s just part of the job.  In fact, here’s a great post by another adoptive mother that sums up my thoughts exactly and might give you some insight into why we keep marching happily along in times of great darkness.

So what exactly am I rambling about today?  Well, I guess I just wanted to a chance to show off my babies.  After all, they are the reason I awake each morning with a smile on my face and the reason I advocate for those around the globe who have no voice.  They put the passion in my heart.  So excuse me while I do the mom thing and drown my blog with their cuteness :)

Halloween…for all

“With Halloween upon us, please keep in mind that a lot of little people will be visiting your home. Be accepting. The child who is grabbing more than one piece of candy may have poor fine motor skills. The child who takes forever to pick out one piece of candy may have motor planning issues. The child who does not say “Trick or Treat” or thank you may be non-verbal. The child who looks disappointed when they see your bowl might have an allergy. The child who isn’t wearing a costume at all might have a sensory issue or Autism. Be nice. Be patient. It’s everyone’s Halloween!” ~author unknown

 

The Gift

He had a traumatic and tragic birth history. He spent his first four years of life in two different orphanages.  He was diagnosed as being severely mentally delayed.  He was nonverbal and faced a life of institutionalization.

Flash forward 1 year and 10 months, a new home, a new family….

He is diagnosed with autism. It is found that he possesses a gift.

The gift is numbers–math.  He counts everything.  He can count a collection of hundreds with a single glance.  He can add, subtract, multiply and divide in his head and does so all day long with great joy.  His entire world is a puzzle of numbers.

He is five years old.

He is now being placed in a 4th grade level math class at school.  His verbal skills are at a 3-year-old level and his self-care skills are about the same level or below.

But his gift is amazing.

His story is still unfolding, and how lucky I am to be a part of it. He has taught me a lesson that I very well might have missed out on otherwise.

What would this world be like if we could all see past each others weaknesses and instead only focus on the many gifts around us?

 

 

My First Half Marathon

This morning I ran the Haunted Half Marathon on the lovely Cumberland Plateau located in Eastern Tennessee.  It was a beautiful day for a run!  The air was crisp and cool and the leaves were covered in the shades of autumn.  I was very pleased with my pace and run time as well.

And the best part of the entire race was that I got to cross the finish line with my boys!  I couldn’t wait to get to the end to see their smiling faces.

Today I ran on a team that benefitted Rising Above Ministries, an organization that supports families with special needs children.  I dedicated each mile to a child with a special needs today and it was the greatest motivation to keep me running strong when the hills got high.  What an awesome experience!

Almost Wordless Wednesday

It’s been a rough week….just all around tough for the whole family.  Autism stuff, school stuff, health stuff and a bunch of other stuff thrown in.  BUT, we’ve had some good moments to add to the mix.  It’s those small moments that get you through the tough times and remind you how blessed you are.

Little Man’s big catch (and he was safely released!)

Field trip with the boys

The newest member of the family, a sweet little kitten that took up residence under our front porch.  Little Man is thrilled….the hubby and the dog?  Not so much.

The Power of We

Today is Blog Action Day, a time for bloggers from around the globe to unite and join a global discussion about one important topic.

“The purpose of Blog Action Day is to create a positive discussion that enables social good about an important topic. We ask bloggers to take a single day out of their schedule and focus it on an important issue.

By blogging about the same issue, on the same day, from their own perspectives, the blogging community focuses discussion and give their audiences the opportunities to take part in a global conversation, raise awareness or even funds for not-for-profits.”

The topic for today is The Power of We.  I love this topic so much and was really excited to write about it.

the reason I started blogging in the first place…..Little Man and I meeting at the orphanage in Vietnam for the first time

I started blogging in 2007 as a way to chronicle our adoption journey.  At the time, it was just a way for us to keep family and friends updated on the long, complicated journey.  Over time, my blog changed a lot.  I wasn’t sure what to write about or how to use my online presence.  But then slowly, after the adoption of our second child (a special needs, older child adoption) I knew what purpose I wanted my blog to serve.

My blog, you see, became my voice.  A voice to raise awareness on the issues that had affected my life personally: autism, special needs adoption, older child adoption, HIV adoption and the HIV/AIDS orphan crisis and non-profits providing aid to orphanages and children around the world.  I  even found my voice in encouraging others that adventure and the outdooors are for everyone–especially for children and those with special needs.

In 2009, through the power of blogging, I was able to team up with some other adoptive mama’s to start a series of campaigns to raise funds for children and families in Vietnam.  We had never even met in real life, but we had forged a connection through our sons’ shared heritages and our online voices.  We took a small idea and using he Power of We, were able to give life-saving surgeries, meals and other resources to people in need.

In 2012, again through blogging, I was able to connect and meet with the moms involved in the World Moms Blog and was able to spread my voice even further by becoming a contributor to their social good column.

And again in 2012, I was able to join a coalition of moms called the Global Team of 200 in an effort to spread my message of social good far and wide.

I am just beginning to harness the Power of We.  I don’t know where I’m heading, but I know it’s right where I’m supposed to be.  Blogging has not only let me find my voice, but has let me truly discover the amazing Power of We. I am so excited to see where this journey takes me.

Together, our voices united, we can bring about the changes we seek.  I have seen it happen before and I am honored to be a part of the Power of We.

Won’t you join me?

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. ~Margaret Mead 

Best Buddies 5K

On Saturday I ran my heart and soul out for the belief that friendship is for all.

I ran and when I grew tired, I thought about Big Brother and about how hard he must work each day.  I thought about how he never gives up and always fights, no matter how hard it is. I thought about how easy a race must be in comparison to living without friendship and in comparison to living with Autism.

I ran and thought to myself what a blessing it is to have two strong legs and two healthy lungs.  I thought about how blessed I am that I can show my gratefulness each day by using my gift to help others.

I ran and watched over 1000 smiling faces running for those who couldn’t and for those who are their best buddies.

I ran for team Big Brother and all those like him.

I ran and ran hard with a smile on my face, choking back tears as I saw countless runners sporting pictures of their best buddies.

The sun was strong and the hills were high, but I finished in 35 minutes keeping a steady pace throughout.  I was proud.  But more importantly, I couldn’t wait to go home and hold one of my best buddies after the race:

It was a good day.