Category Archives: Special Needs Parenting

Nature’s Grand Finale

“Fall has always been my favorite season. The time when everything bursts with its last beauty, as if nature had been saving up all year for the grand finale.” ~Lauren DeStefano

Nothing makes my heart and soul sing more joyously than a hike with family through the autumn leaves! So grateful that I live in a part of the country where autumn is always breathtaking and the temperatures are just perfect. I hope you are enjoying the fall where you live as well. How do things look where you are today?

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On the importance of getting out “there”

….no matter what “there” means to you.  While the past 8 months or so were quite eventful, stressful and busy for us, we did manage to enjoy some fun as well. In fact, the best and most peaceful times seemed to be while we were out enjoying our “there”–the great outdoors. Let’s play catch up:

Winter hiking (this past February) at Rock Island State Park:

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Early spring hiking in the Smoky Mountains:

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Summer coastal fun at St. Simon’s Island:

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Jeannie Reeves Photography  www.jeanniereeves.com

And of course, Little Man was able to run the Columbia Muddy Buddy again this past summer:

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There were also lots of Little Man-Daddy fishing and kayaking trips and visits with family. I’m so thankful we took the time to get outside, even during one of the craziest times of our lives. Despite a difficult pregnancy, a year filled with psychiatric breakdowns for one of our sons and so much more, we did it and I’m proud of us for showing our children what is truly important in life.  It was so worth it–to all of us!

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….

 

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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

Finding Joy in the Trenches

It would seem as if I had fallen off the face of the blogosphere. I’m not sure if there is anyone still reading, and I’m sure there are some folks who were wondering if I’m still around at all. The last time I posted was February and in the middle of a fun photo challenge I was hoping to get started. What a bummer, huh?

Sometimes life has a funny way of stopping us in our tracks when we least expect it.  At least that’s what happened to me.

But let me back up a bit. A lot has happened in these past 8 months. First of all, we added this little guy to our family:

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The newest member of the Hiking Family made a surprise appearance in August. He is healthy, happy and such a joy to parent! I wish I could say that it was an uneventful pregnancy, but it turned out to be quite a journey, in fact.

He is now 2 months old and ventured on his first hike this past weekend.

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So where do I begin again? These past 8 months have been life changing. In a very short span of time I was hospitalized three times during my pregnancy, Big Brother (pictured on the far left) was admitted to the psychiatric hospital twice–encompassing 16 days in treatment–and I lost a very dear loved one.  We also made some life-changing decisions and are wading through the aftermath.

We are now trying to find ourselves amidst the new challenges we have been dealt. And I’ve come to the conclusion that instead of waiting for the fog to clear, I will instead strive to find joy while wading in the trenches. I want to use this blog to continue to chronicle our family adventures, but to also now navigate our life as we deal with some new and unique challenges. I’d love it if you joined us. Stay tuned for more of the story….

What to Expect When You’re Parenting…Adopting…or Not.

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I suspect that most adoptive parents, like myself, spent countless hours pouring over every adoption-themed book they could get their hands on while waiting to meet their children.  Most adoption books are filled with what to expect as a new parent, helpful advice for the adjustment period, the do’s and don’ts, attachment info and even scary worst case scenarios.  As helpful and necessary as these books are, I find only one truth really holds in parenting children through adoption–

Expect the unexpected.

Always.

We all expect it to be hard.  Throw in issues like post-institutional trauma, histories of neglect and abuse, older age, special needs, medical needs  and all the things that will forever remain unknown in your child’s past, and you have a recipe for something that seems mind-boggling in terms of difficulty.  And it is.

Now as I am embarking on an entirely different path to parenthood (you know, the “old fashioned” way) I find the wait to be just as scary as before.  There are all kinds of books that tell you what to expect for each stage of parenthood from prenatal to the teenage years. But this time around, instead of dealing with broken spirits, broken bodies and wounded hearts, I’m preparing to birth and care for a tiny, helpless infant….and it seems a little scary!  And I’m sure that just as before, the expect the unexpected motto will still hold true.

So here I am, reminiscing on all the things I didn’t expect as a parent…

1. Difficult doesn’t even begin to explain how hard parenting a child will be. Throw in special needs, wounded hearts and attachment issues and it’s just plain tough.

2. You will, at some point, feel like a failure.  It happens to us all. But you’re not–you’re just human.

3. You will mess up.  Just own it and move on.

4. You will feel so much love and pride for your children–even the one who doesn’t yet know how to love you back–that you will often feel like your heart will burst.

5.  You will always worry about your children and their safety.  No matter how big they get, you will always have that mother’s worrying heart.

6.  Watching your children experience pain will be the most painful experience of your own life.

7. What you thought would be important before your children arrived (rules, discipline, etc.) will most likely change after they arrive.

8. You will want to curl up in the fetal position and cry some days.  It’s OK.  We will all feel like that sometimes.

9. On some days, you will feel like the most accomplished human being on the planet even if your only achievements were keeping the kids fed, bathed and alive.

10.  You really can’t do it alone.  No matter how brave, smart, talented or great you are, it really does take a village.  And you’ll need a village for yourself, too–a group of moms who understand and support you, even on those days when you feel like curling into the fetal position.

So what’s on your list?

 

Two Years Ago…we became a family of four

Two years ago today we were flying home from Hong Kong, exhausted, overwhelmed, a bit scared but very excited.

That means Big Brother has been home for two entire years!  What a wild, crazy adventure it’s been.  Although Big Brother has come so far, he still has so much to overcome.  But we’ll get there.  We couldn’t be more proud of you, Big Brother!

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Our Top 12 Outdoor Moments of 2012

As 2012 is winding down, I feel a little sad that my family and I have not been able to spend as much time outdoors as we normally do.  With three rounds of family strep (yes, 3!!) and other medical issues, getting outdoors has been hard for us over the last couple of months.  So I’m really looking forward to getting back in the groove of outdoor livin’ in 2013.  To cheer myself up a bit, I decided to take a look back and reminisce on our favorite outdoor moments of 2012.

12. New Year tree huggin’ on Fiery Gizzard Trail (our fave trail), January 2012

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11. Autism and the healing power of nature, February 2012

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10. Nature day with mama, March 2012

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9. First canoe trip of 2012, April 2012

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8. Nature for all, May 2012

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7. Mother’s Day Caving, May 2012

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6. The Great Sand Dunes, June 2012

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5. Mini Muddy Buddy Run, July 2012

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4. Alone in the wilderness, August 2012

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3. Adventure and the special needs child, June 2012

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2. Alpine Views in Colorado, June 2012

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1. Water fun and Little Man’s 1st Kayak, July 2012

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OLYMPUS DIGITAL CAMERASo what was your favorite moment of 2012? Any adventures you want to share before the new year falls upon us?!

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