Thursday, May 03, 2012

Dual Diagnosis: Autism and Down syndrome: The Post-Institutionalized Child

Today was the day.  Not one we've been dreading or even earmarked in any special way on the calendar, but that's because our journey to an Autism diagnosis is much different from many other people's experiences.

Today, Emma received the official diagnosis of not "just" Down syndrome, but added Autism Spectrum Disorder,  Obsessive Compulsive tendencies, and Echolalia from a neurologist.

Yes, we knew it was there, knew the diagnosis that would be made, and were already dealing with the effects of these diagnosis...

No, it isn't what we hoped for our daughter, isn't something we wanted her to have to deal with, and isn't something "easy" as a family to deal with.

But deal we do :).

Backtracking...a look in to the early life of a post-institutionalized child

Emma came to us in 2008 at 5 years old.  She was 17 lbs, severely malnourished, neglected (with scars from lack of diaper changes to prove this...), and had the responses that signaled previous abuse.  Emma spent the first five years of her life inside of a crib in a room with three other cribs.  There were chair-height walls in the room and glass windows above that to the ceiling on the interior walls, and a door which remained closed.  It was in the front area of a special needs "infirmary" at an orphanage in an Eastern region of Ukraine.  There were two other rooms just like this one in the front room as well as a small open kitchen and another room which served as a lounge/office for the workers.  Then there was a hallway with 3 or 4 of these rooms off of the hall down one side, all looking the same with four cribs in each.  Micah was alone in the furthest room down the hall for his first 18 months.  Likely because he cried pitifully and constantly.

Emma was not held, made obvious by her total distaste for being held for long periods of time upon arrival in to her brand new "longed for forever family."  She wasn't able to hold the weight of her own head, much less put any weight on her arms, legs, or try to get in to a sitting posture.  She rolled over, side to side, and moved about in her confined space, about the size of a pack and play in the US.  She was treated with medication to help control her body's response to her heart, however she wasn't given the opportunity for the open heart surgery that she so desperately needed... she had a complete AV canal, which in the US is always repaired before age 1, and usually as soon as a child reaches 10 lbs.  Sooner if the child stops gaining weight or goes in to further heart failure before reaching that ideal weight (such as Brianna, who had hers at 5 months old weighing 8.5lbs).

Emma had other medical issues due to her heart not being surgically repaired.  She had multiple series of strokes or TIA's which caused lesions in the white matter of the brain on both sides.  Why? Because her heart was unrepaired and the way it worked allowed clots to form that then passed to the brain and caused strokes.  Emma's left side is now slightly weaker due to those strokes in her infancy and early life.  Another environmental factor that forever changed Emma's life.

Emma was fed broth through a bottle with a nipple cut so large that she didn't have to suck, the liquid poured out in to her mouth, all over her, and she wore as much as she ate.  She sat in soiled diapers, was fed about 8 ounces 4 times a day, and she laid there.  To entertain herself, Emma sucked on her hand.  Not just her fingers, no... she put all of her fingers, fully extended, down her throat and her entire hand except her thumb in as FAR as she could.  Yes, well past where a gag reflex should have been.  She would take her other hand and SHOVE her hand in deeper.

Emma dislocated her knees and ankles.  I'm sure it hurt, but it was a physical sensation, and she had to have SOME input.  She scratched at herself.  She rubbed her face until it was raw.  She rocked her entire head, neck, shoulders, and upper body while she chewed her hand up, back and forth, back and forth.  She had a crudely-buzzed haircut and a balding area along the widest places on her head which showed where the hair refused to grow because of the constant friction.

Emma didn't make any eye contact, didn't like to be held, smelled horribly and had the worst breath I'd ever smelled.  She'd never had her teeth brushed, she didn't care for myself or Michael very much, and she didn't tolerate the attention of Brianna or Kristopher for more than a few minutes at a time.

We had to learn to love Emma.  And she, well, she had to learn to like anything... and eventually to love.  It wasn't an easy process for either of us.  You know who it was easiest on?  Those we'd prepared for it to be the hardest for.  Kristopher and Brianna.  The unconditional love of CHILDREN.  They loved her no matter her smell, her bad attitude, her pushing them away.  Brianna, 2 years old and also with the diagnosis of Down syndrome, saw Emma as a sweet baby.  She would sit and suck her two fingers and rub Emma's head.  Kristopher would try to hold her, encourage her every step in her accomplishments, and admonish her when she wasn't behaving.

And then there's the screaming.  When Emma was done with something, or was uncomfortable in a new situation, or when she just had "something" bothering her... often unable to be distinguished by us... she would scream.  She would collapse in to sobs and then escalate to complete FITS.  There was nothing we could do except keep her safe, lay her down, and often put her in a crib and leave the room.  After all, that was her "comfortable place."  Not the arms of her mom and her dad.

It's hard for adults to bond with a "stinky, smelly, screaming, non-compliant child" that can't do anything for herself and doesn't want you within 5 feet of her.  It's hard for a child that's known nothing but self-reliance, abuse, neglect, an empty stomach, a bottom covered in sores, and didn't understand the idea of touch, holding, communicating, or eye contact to all of a sudden join in to a "regular American family" that wanted to love her, hold her, and bond with her.  For a 2 and 4 year old... it was a MUCH anticipated sister who their mom and dad traveled the world to bring home, and she was a TREASURE.

We have so much to learn from our children...

I know plenty of people that will read all that I just wrote, or experience something similar either in their travels or in their own adopted children's history and they feel nothing but anger.  Anger toward the people who "did this" to her isn't one of the things that comes to mind.  In Emma's situation, the people at the orphanage were not systematically starving Emma (though I know this does happen at other places).  They weren't denying her medical care that THEY could get for her.  They weren't leaving her be because they didn't like her.

The workers in the orphanage where Emma lived did what they knew how.  They treated the symptoms.  They left her alone when she was mad.  They fed her what they were told.  The diaper neglect... who knows.  The abuse, I don't know about that either.  But I know that the women WHOM WE MET and spent time with, and who I have SINCE BEEN BACK TO VISIT AND SHOWN PICTURES OF EMMA THEN were nothing but sympathetic to her, and truly cried tears of joy when we showed up the first day to visit with her after receiving her official referral and permission to do so.  They, of course, thought we were crazy, especially since she and Micah would make FOUR CHILDREN! (We laugh about that now... :) We had 6 kids when I went back to visit.  We were in process to adopt our 7th (Wesley) and had just found out Aleksa was still alive and well when I was there visiting them).  These women were simply doing their job, and turning off their hearts because they KNEW that if they allowed themselves to FEEL, they would be overwhelmed by the day to day of their work.

Societally, they had been brought to believe that the children with disabilities were "less than people" and not only worthless, but unable to understand, feel, etc.  In that society, the amount that the caretakers DID CARE was amazing.  And thankfully, education as well as the opening up of the closed world that is coming about through availability of the Internet is giving human rights a whole new look, especially for children and adults with special needs!  Change is slow, but it is coming...

Jumping ahead to today... The post-institutionalized child, 4 years home in a FAMILY 

Emma is a changed child.  The sparkle in her eyes, the HEALTH in her overall body, and the joy in her countenance are a complete 180 degree turn from the child we first met in Ukraine over 4 years ago!  Emma now understands English, which is of course helpful!  She had her heart repaired, her tonsils and adenoids removed, she had tubes placed in her ears, and she has received glasses to correct her vision.

Our little miss has had several years of therapies including OT, PT and speech therapy.  She's had homebound school services for a time, and then 2 1/2 years in the public school system in a specialized classroom for children with special needs.  She's also had 4 years of LOVE.  4 more siblings added to the family.  Four grandparents that have also learned to love and accept her.  A church nursery that has "learned to adapt" along the way to accommodate her in to children's programming.  Continuous oversight by physicians to see any underlying issues or preventative measures that may need to be cared for.  Emma has received orthotics to correct her foot pronation, intense therapy at home and through private therapy to learn to hold her head up, sit, weight bear through her legs, and even to re-train her brain what a reciprocal movement is.  Eventually to WALK at 8 1/2 years old!

More than anything, Emma has learned to ACCEPT AFFECTION!  She has a special place in her life for her Grandaddy... she will even leave a full plate of food to go hug him and demand she be held by him!  Her mom and dad... we've come a long way too!  We have learned not only to LIKE her, but to LOVE her unconditionally... to an extent that in the first year or two I continued to question whether we would be able to fully do or not.  Now, I know that love takes time.  But... it is absolutely a DECISION.  One worth EVERYTHING.

The Autism Diagnosis: What Autism looks like for THIS post-institutionalized child with Down syndrome

Why so specific?  Because every child is different.  Every story is unique.  Every child with autism, whether or not they have a dual diagnosis, will present differently than another.  This is our Emma, and what things we experience with her which are different than a child that may have JUST Down syndrome.

***Let me note, that several of the things I'm going to list below are also signs of OTHER things, and NOT Autism.  It's really the "whole package" which determines that it is Autism that Emma has, and not Down syndrome with either sensory processing disorder, or something similar to that.  Two of our other children have SEVERAL of the issues described below, but they don't have them ALL.  And we have no concerns that either of them has Autism, however they definitely do have other sensory difficulties :)***

Here's a list of the things which I wrote out while waiting at the doctor's office this morning which describe ways that Emma is "different" then most children, even those with Down syndrome.  They're in no specific order, just written down as I thought of them, and there are likely others that I'm missing...

  • No initiated social interaction with peers
  • Inappropriate responses to children- hitting, pushing, throwing things
  • Self-injury: used to bite hands, put hands in mouth to gag area, and still scratches herself when uncomfortable and pops joints in and out
  • Little or no imaginative play: will mimic rocking a baby and patting, but on her own she hits, puts a book over the doll's head and covers the head and torso with a blanket.  She sits dolls up and bangs their heads against walls, and cannot stand to have clothes stay on the doll.
  • Obsessively overturns furniture: chairs, kids' picnic table, small trampoline, stools, kid's shopping carts, etc.
  • Flaps books, papers, plates, frisbee.  She prefers flat round objects like toy plates. She puts them against her lips to do this often times.
  • Chews anything soft and puts them in to her mouth and down her throat even.  Stuffed animal appendages, stuffed doll hands and feet, stray socks, pillowcase and pillow corners, sheets and blankets, etc.
  • Very little meaningful communication: lots of (repeated, constantly) sounds and will mimic "Emma" or "Mama".  Can show signs for many words (baby, self, some alphabet letters, food words, animals, colors, mom, dad, etc.- probably 30-50) but rarely initiates using signs for useful communication. 
  • Doesn't answer questions- repeats a part of what's asked: for instance "do you want more" she replies "mmm" and signs more.  A second later (even before receiving more) "are you all done?" she replies "ahh" and signs all done and begins to leave.
  • Refuses many food textures: deli meats, fruits such as banana and grapes, most "gooey" solids.
  • Doesn't follow directions outside of her routine or with multiple steps.
  • Craves firm touch, spinning, brushing, loud music right at the ear, etc.
  • Laughs when others cry
  • Often doesn't respond to pain at all
  • Is easily upset in new situations, unfamiliar surroundings, and new people.
  • Behaviorally goes from one extreme to another, especially in new or stressful situations.  One minute clicking joints, crying uncontrollably... next minute uncontrollable laughter.
  • Doesn't understand social appropriateness: belching/gas passing is ABUNDANT when she's uncomfortable, especially.  Also blows her nose with no tissues but won't blow in to a tissue, etc.
  • Not toilet trained at 9 years old.  Can hold urine, but doesn't associate it with the toilet.  Will sometimes go in the toilet if timed well, but isn't anywhere near consistent with it.
  • Throws everything in her path when trying to get somewhere (especially when scooting instead of walking)
  • Affection is very much on her terms: high 5's, hugs, holding hands, etc is ONLY when she is initiating or accepting of it.  If she isn't, she's adamant that she doesn't want the touch or attention.  She will do this with adults, however with children she almost always pushes them away.  She may accept one minute, and the next minute refuse any attention or affection.
  • Lack of reciprocated responses: Emma will occasionally respond "hi" or "goodnight", usually after prompting.  She will often say "bye" in uncomfortable situations, presumably to escape sooner :).
There is no greater gift, than to be able to raise a child entrusted to us by God, and to love her, learn from her, and to care for her. 

In other places, she'd be described as broken, damaged, retarded, useless, unworthy, incapable.  

In our eyes she is perfect, precious, lovable, a sister, daughter, friend, a wonderful gift, a precious life. 

James 1:27 "Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world."


  1. I loved this post. So thorough. Thanks Mer!

    Also, still makes me wonder about Evie. She has pretty much that whole list to a T ... but still no dual dx for her. grrr...

    1. I agree with Gilllian! Excellant post. Gillian I believe Evie should be dually diagnosed,as little Emma. Just have to find the 'expert' who can tell you what you know!!

  2. Can I just say how much I LOVE you guys? I'm in constant admiration for all that you do, for the beautiful family you've created, for your patience, your resilience, your unconditional love, ALL of it.

  3. I was just wondering and here already are your answers. So sorry to hear that it's been like this but I understand totally. Thank you for being so honest. I haven't had the international adoption experience, but I was on board and cheering when you brought Emma home. I've been thinking about writing something like this, about living with our Ella. People often don't want to believe that a child with Down syndrome can also have autism, but it's actually common. It takes a lot of hard work to get to the diagnosis but in the long run it will be very helpful, even just for ourselves as parents (and the extended family) to understand our kids with dual DX. I agree they are so wonderful and loveable, we just need to know them. Our happiest moments are watching Ella express her joy.

  4. Even with all the *differences* reading this brings me peace in my heart & Joy for Emma. She is a remarkable little lamb & I'm just so grateful to God's work that she has a safe and loving home, complete with brothers, sisters, Mom, Dad & more. The note about Granddaddy made me misty eyed & what a ray of sunshine to soak up the intense bond she has with him. I remember the little wisp of a baby (at 5 yo) from the photos, the enormous prayers through her health trials & watching the videos as she began to grow & thrive. I still get goosebumps & waterfall of tears thinking about her learning to walk video clips. Thank you for sharing it all with us, Mer-- for sharing your sweet, Emma. Even though we've never met, we are blessed to have experienced your love for all your children from afar. God's blessings & a warm Schoonveld hug. =*)

  5. Oh Meredith! I know I don't live with Emma but, I don't see any of the symptoms. I only see an incredible miracle child who was written off in Ukraine and almost written off by the US cardiologist. You all fought for her and she has blossomed! She always brings a smile to my face. She is just beautiful and we love her (and the rest of the pack!) ;-)
    Thank you for sharing so honestly.

  6. Amazing post. We totally understand. Love from the Malones.

  7. Please please email me or better yet call me. We are starting the HS to adopt an 11 year old girl from eastern europe . She has DS and im pretty sure autism too. I desperatly want to talk to someone about this process and prep for her. My email is...
    Phone: 701-609-1441
    I would so so so like to talk with you and pick your brain.
    Thank ypu
    Jenny isom