Proven Wrong in a Great Way

Today I was proven wrong, in a great way. Any mom of a child with special needs can tell you, the "grieving" doesn't totally go away, it just hits you at different times. (The grief over the loss of what you dreamed for your child). The room mom for Katie's "home room" class, (a typical kindergarten class that she goes to music and art with) called me for the Halloween party sign-up this week. I chatted with her and explained that I might not make it to the Halloween parade today because honestly, my daughter wouldn't probably even notice much of a difference if I was there. As soon as I said it to this mom who couldn't possibly understand, I felt that speechless sadness that sweeps over you. Last night, I felt God challenging me to make the extra effort to come today regardless if she would note my absence or not. I brought Cara and we waited with the hundreds of parents for a glimpse of our Katie. I warned Cara that she may not even wave at us in the chaos. As she passed us, she looked up right at us and broke into her beaming smile, signing "Mama!" "Cara!" Her assistant even let us join in the parade and she held my hand and Cara's. She giddily SKIPPED the rest of the parade, visibly thrilled that HER family had come. Cara kept telling her, "Oh, Katie, we're both SO PROUD OF YOU! You're the BEST Snow White ever!". I cried on the way home. Thank you, Lord, for proving me wrong. ‪#‎cryingagain‬

Not just a learner...

You have to hear this quote from today...first: How did our first "Moms of Treasures" group go today? Wow. What a blessing to me. I've been trying to find the words. There's ten of us (a couple couldn't make it today), all moms of children with various types of special needs, all so thankful to have a place to share our hearts. I shouldn't have bothered wearing eye makeup. ;) I asked our "mentor mom" if I could share this here, I know so many of you SN moms would blessed to hear this story. So our mentor mom told us that one night decades ago, her son was really struggling in school, and she was crying herself to sleep about it, grieving. With her permission, I'd like to share what she said today about that night. She said, "I was crying out to God that night, weeping, asking Him, 'WHY, Lord? It's not fair, why is it so hard for my son to learn?' She said she had a moment where she felt Him impress very clearly to her heart, 'because he wasn't put on this earth to be just a learner but a TEACHER.' "
Oh friend, we all, ALL agreed, each of our treasures are such teachers to us. I have learned more from Katie than I could have been taught for years in a classroom. She's been one of, and will continue to be forever, one of the best and most precious teachers of my life.
And I almost missed it. What a treasure.
#notjustalearnerbutateacher

Leaving my safe harbor...

There are God-moments everywhere, if you just look for them. I almost missed a BIG one today. I was frantically rushing through the grocery store getting brownie ingredients and tea assortments for this afternoon's Moms of Treasures tea. (I'm starting a support group for local moms of special needs children). I passed a mother with a grown son in a wheelchair and I had that anxious internal conversation with God. I knew he wanted me to go up to her and talk to her about our group today but when you have a child with special needs, you know how threatening it is when someone approaches you and mentions their special needs. I argued with God for awhile and made it to the dairy aisle before I realized that it was worth the risk. I approached her, introduced myself, and told her about our group. She and I both got teary eyes she recounted that she had just moved to this area and was really looking for a church where her son might be able to fit in. We had a wonderful conversation about the ways that both of our children are a precious blessing to us, I loved meeting her sweet son, and they will be coming to our next meeting in a couple weeks. Thank you God, for pushing me to leave my safe harbor time and time and time again.

My Life for Yours. Gladly

(An adoption support organization published our story today...)

My Life for Yours. Gladly

 September 16, 2015  by nohandsbutours  ADHD, autism, developmental delays, Developmental System, institutional autism  0 Comments

This is a story about expectations vs. reality. A story about HIS grace in the midst of my weakness, my fear, and my anxiety. This is our story. But I don’t want our story to just be for us. In the adoption community, our expectations are almost always at least slightly different than reality. I pray that our story encourages one of you, struggling with navigating a special need or reality that took you by surprise. As Francis Chan says, “God doesn’t call us to be comfortable. He calls us to trust Him so completely that we are unafraid to put ourselves in situations where we will be in trouble if He doesn’t come through.” 

Here’s the thing: adopting IS a situation like that.

Here’s the other thing: He has ALWAYS come through for our family—certainly not in a “yes” to each request, but in His incredible grace and strengthening presence daily. I want to tell you our story and then, at the end, express four things our journey has taught us so far. And in so doing, my prayer is that I may encourage those of you who may need a glimmer of HOPE.

---

---

I once heard a helpful analogy about adopting a child who has a different or more severe special needs than expected. The adoptive mom likened it to packing your bags for a trip to one country, and instead finding out that you arrived in another country, with a totally different climate than what you packed and prepared for. I did that, to some degree. I packed up my bags for a mild-climate country called “Deafness”. While I was packing for Deafness, people cheered me on. Family members enthusiastically spread the news and friends helped me raise the funds. I would tell strangers about my upcoming journey and they would say: “Oh, Deafness! I hear that people from there can go on to do whatever they dream in life. They can be athletes, doctors, teachers; they can really be successful! How wonderful, you’ll have a great time there!”

In preparation, I even went to classes each week for a year to learn the native language of Deafness: sign language. I taught my 3-year-old biological daughter hundreds of signs, and quizzed my husband through the vocab. I read books written by other tourists and natives. I learned what to expect, how to navigate the roads, and more about the continent it was on (“Adoption”), as well as what the culture and sub-cultures would be like. On the morning of May 5, 2014, I thought we’d be landing in Deafness, but, with a jolt, I realized our plane was never really headed there, as we landed instead in the strange and surprising climate of another country: Autism. I was confused and frightened. Nevertheless, I fell in love with my sweet, 4-year-old tour guide that day. ;)….

---

---

Here goes…

When we first saw videos of Katie, before we met her, I saw many signs of institutional autism in her. What’s “institutional” autism? It’s a condition that happens to a child who was raised in an orphanage and had extreme neglect of nurture. It mimics autism in every way: lack of eye contact, “stimming” behavior, a lack of social engagement, etc. Only time can tell whether a child has institutional autism or actual Autism Spectrum Disorder. 



With that said, rewind time with me to May 5, 2014 again. Katie walked into the hotel lobby in Shijiazhuang, China, and she walked into our arms forever. What an emotional day that was. Within 90 seconds, literally, of meeting my baby, I KNEW that her institutional autism was way more prevalent than I had expected. I had a silent moment of indescribable anxiety. NOT FOR A MOMENT did I second-guess our commitment to her at all, but instead felt more like someone at the base of Mount Everest, taking in the enormity of the mountain itself, and the challenge that lies ahead.

In that silent moment, I remember gripping onto the Lord for fear of losing my sanity, and begging Him for peace and strength. I silently cried out to Him, “Lord, I NEED you to remind me right now of hope, that the child in front of me is right now the worst off she will ever be again, and that, from this point on, she will grow and blossom. She’s my baby, and I believe we can do this, but I’m going to need your help every step of the way.” That hope rushed over me and assured me: He will equip me, He will never leave me or forsake me. I fell in love with Katie that day, exactly as she was. But knew that in order for her to blossom more and more, I would have to face the most challenging thing I have ever done.


That summer was HARD. I’ve never felt so alone in my life. The adoption community didn’t fail me, but I deep down felt I no longer belonged, since my child was so clearly NOT the poster child for an easy or even straightforward special needs adoption. Most children in the adoption community do have some challenges that are unexpected, beyond their special need. But most do not have issues as prevailing as Katie’s. Other friends’ deaf adopted children were starting to sign in complete sentences within a month of being home from China. As hard as I tried not to compare Katie to them, the differences were glaring. Katie WAS deaf/ hard of hearing, and her new hearing devices allowed her to hear nearly perfectly, but that’s never been her greatest special need.

Our greatest challenge would be to break down the walls that neglect built; to find a way for us to enter into her closed world. The year of sign language classes seemed at times to have been useless. I could sign almost all day long to her, and she’d NEVER look up at me. I found tricks to get her attention for a fleeting 2-3 seconds: holding an apple to my cheek and signing “apple”. I’d put my hand on hers, helping her to sign “eat” or “eat more” between every single bite, all day long. She seemed to not make a connection, for months and months. The deaf community didn’t fail me, but I also felt that I didn’t belong there. Sign language wasn’t working for my child, because she wouldn’t even look up.



The lowest point was an interaction in the early fall, after she had started attending a deaf school. She really hadn’t made much progress in 5 months of being exposed to language, and one educational professional administered a crushing blow to me that felt like the wind had been knocked out of me. I won’t share what she said, but basically she believed it was “too late” for Katie’s brain. She might as well have told a mother of a patient with stage 2 cancer to not bother pursuing chemo. Her statement messed me up horribly for days. I struggled to cling to hope. I knew I didn’t believe that woman, but I struggled with the possibility that Katie was perhaps NOT going to get much better, that she may never learn to express herself well, and that she would live with us as an adult. I grieved HARD. I felt so many dreams I had for her crumbling and it scared me. I had friends and family (especially both our moms) speak truth to me, and hope, and I clung to that.


---

---


I love how simply my husband, Doug, loves Katie… his words to me then and now still propel me in the hardest moments: he said, “I don’t care if she doesn’t meet someone else’s expectations for progress. I don’t care if the world doesn’t understand her or see her as a success. She’s our baby and I love her for HER. I enjoy HER. She is ours and nothing anyone says about her can lessen how much I love her.” I agree with him all the way to the deepest part of my soul, and our biological daughter, Cara, feels the same way too. I think of those words every single day. Thank you, honey.



The best miracle happened that next week in October. It seemed as though the language part of her brain, which had never grown the neural pathways in the years of silence and without sign language, started GROWING and everything was “clicking”. In Miracle Week, Katie went from signing almost NOTHING without hand-over-hand prompting and help, to signing one, then two, then ten new signs… THEN by the end of that week, signing a full sentence, unprompted: “Eat more orange please Mama”! Do you feel the amazement we felt then?!?!?

Since then, she’s blossomed in every area. In language, she started copying new signs without help, and produces around 60 signs regularly, with a constantly growing list. In social connection, she delights in running to us for hugs and kisses, unprompted, and really takes joy in our sweet Cara. In eye contact, she’s slowly improved, especially in watching us sign. 

Katie attended a deaf school for most of last year but they simply don’t specialize or really offer ABA therapy (a popular autism therapy), and we all agree that’s what she responds to the most and needs the most. We also needed a doctor’s diagnosis that included “autism” to propel us forward in getting her the therapy she needs.

In February, I took her to a specialist and explained her history and her behaviors extensively. The doctor listened and evaluated her and agreed completely. For now, she has a diagnosis of ADHD (our sweet girl never ever stops moving), and Autism Spectrum Disorder, recognizing that it may be institutional autism (only time will tell). Regardless, behavioral therapies will help her dramatically. In May, we moved Katie to an excellent ABA-based special needs program where she has access to sign language throughout the day. We are confident that behavioral therapies will help her greatly and that sign language will bridge her auditory processing gap for now. I have much more confidence in my ability to advocate for her as needed and that as long as she has her #ibelieveinKatie community in her corner, she’ll get the best education possible.


---

---


The bottom line, I can honestly and unashamedly say that I went through a grieving process last year, letting go of what I thought my baby would be like. But I am finally able to FULLY celebrate WHO Katie is, and enjoy her, without the pressure of other people’s expectations, or my own, weighing me down. What have I learned in these 16 months?

1. Take one day at a time.

For parents of children who may need lifelong care, it’s beyond easy to lay in bed at night and worry (for any parent, really). But for me, it’s very easy to worry about what Katie will be like as a teenager (she wanders now, but one day her wandering could be much further), if Katie will be able to have even a basic job, if she’ll ever be able to be independent, or who will look after her after we pass. I’ve learned that these anxious thoughts only eat away at my soul. They aren’t productive. One day at a time. TODAY, I invest in her by cuddling her, engaging her in activities she loves, enjoying her unique way of thinking, and resting in knowing that the Lord holds her future, as He holds mine.

---

2. “His Grace abounds in deepest waters”.

Deep waters indeed. Katie can be rather risky in her behavior: she tries to run off in public, teachers have pulled staples out of her mouth, we’ve found her chomping on screws, she eats plastic, paper, dirt, sand, and sharp objects she finds anywhere. Last week she was up through the night with what seemed to be horrible abdominal pain and right before I took her to the ER, she vomited up pieces of a bath toy. It may seem rather harmless, but it struck something in my heart. Honestly, I crawled exhausted into bed in the wee hours of that morning and wept. I CRIED out for His mercy on my baby. I simply can’t watch every move she makes; not even her teachers can. They all agree she’s the fastest, sneakiest child they’ve met. I pray the Lord’s protection over her, I pray His daily grace for me as her mama, and that He would help her overcome her obstacles. This summer, He continually gave me the grace I needed in the darkest of times. If you are struggling with overwhelming anxiety as a special needs mom, reach out to me. I’d love to be a listening ear. His grace abounds. I have seen the hand of Almighty God move mercifully in her life, in mine, in our family, and I desperately want to give a message of HOPE to those of you who may be hurting.

---

3. The BLESSING of who Katie is far, far, far outweighs any challenges we face.

Anyone who follows me on Instagram or Facebook can tell you, Katie is hilarious and she knows it. The things she thinks up! Her mind works completely differently than ours and it’s both fascinating and wondrous. She is one of the happiest children I know, too. She has more JOY in any given moment than some people experience in a lifetime. I could write a whole separate article on the bond that she and Cara have. Cara has an uncanny ability to “draw her out”, to share an unknown language with her. Cara is the only child that Katie will interact with yet. I often feel speechless, in awe, to watch them interact, it’s magical. Katie Grace has changed each one of us forever, for the better!

---

4. It’s a gift to give yourself.

In this world, “pampering yourself” seems to be the constant goal, always self-preservation. SELF is “God” in this fallen world. To GIVE of oneself is usually a tiny, superficial thing. As a believer, I am called to more. To give my Lord ALL OF ME often means to allow Him to “pour me out” in loving service to others. Parents do this continually.

Doug and I have a dear friend, Adam, who has a son with special needs. He recently shared a quote and a concept that touched Doug and me deeply. Adam quotes from Henri Nouwen: “Our humanity comes to its fullest bloom in giving. We become beautiful people when we give whatever we can give: a smile, a handshake, a kiss, an embrace, a word of love, a present, a part of our life… ALL OF OUR LIFE.” Following Nouwen’s quote, Adam commented something to his son that gripped us: “I love you, my boy. My life for yours. Gladly.” Adam offered a concept that’s RADICAL. His life, his comfort, his emotional and physical energy, his plans for the future — all of this he’s ultimately offering in service to God, and therefore to his son.

And the million-dollar word that rocks me: “GLADLY”. With joy. To give of yourself, to work hard daily, to persevere through IEP meetings, ABA sessions, stares from strangers, tantrums, concern for their safety, future unknowns, daily struggles and then to crawl exhausted into bed…. to do all of it with joy. They are WORTH it!

---

---

Katie is worth it. From when she was a tiny two-month-old wrapped in a blanket, left outside a village in Hebei, China, to the years she spent in a metal crib without much human interaction, to now, our beautiful, JOYFUL, energetic, affectionate, sweet baby: you are worth it all: “My life for yours. Gladly.”

Video of our Summer... we more than just survived it!

Mamas, we survived the summer. I could write a whole blogpost about how much trepidation I had about Katie having off school, about the moments that I thought I'd completely lose my cool with both the girls, and then how gracious God was to me in the moments I was the most overwhelmed. So many outside factors were pressing against our family. We had some of the best and some of the worst moments ever. By HIS grace, though, an amazing thing happened: instead of going totally nuts (and all moms know what it means to adore your children and still feel like going nuts), I truly fell more in love with our babies. What a blessing. Here's our summer compilation. 

Link to video: http://youtu.be/pGoKKX6ud1M

Lyrics: ♫ Music: Mindy Gledhill - All About Your Heart

Made with ‪#‎flipagram‬
Lyrics: "All About Your Heart"

"I don’t mind your odd behavior
It’s the very thing I love
If you were an ice cream flavor
You would be my favorite one

My imagination sees you
Like a painting by Van Gogh
Starry nights and bright sunflowers
Follow you where you may go

Oh, I’ve loved you from the start
In every single way
And more each passing day
You are brighter than the stars
Believe me when I say
It’s not about your scars
It’s all about your heart

You’re a butterfly held captive
Small and safe in your cocoon
Go on you can take your time
Time is said to heal all wounds"

Empathy wins

So today at the pond, there were two tween girls (around 9 or 10 years old) who were building a moat in the sand. Katie stood in the middle of it until I came and pulled her out. I apologized and I heard Girl 1 say under her breath to Girl 2, "How rude!" 
Me: "She didn't understand, she has autism."
Girl 2 (embarrassed): "It's okay, we know."
I brought Katie back over to the water (about 5 feet from them) and I heard Girl 1 mocking me and snickering. I ignored it. But THEN Girl 1 noticed Katie's ears. Ohhh boy, my heart sank. She grimaced, pointed, whispered wildly to Girl 2, who looked embarrassed again. I had a choice in that moment...
I slowly scooted back over, closer to the girls. "Hi Girls, if you have a question about my baby, it's okay, you can just ask me. She's my miracle girl and the happiest child I've ever known." I told them a bit about what makes Katie so special and about adoption and my dream to adopt since I was young like them. Girl 1 shrugged and backed away. Girl 2 softened, smiled, and listened intently. She finally said, "So, then she's like your dream come true!" I said yes and then overheard Girl 2 as she then said to Girl 1 about Katie "She's so adorable!" and I knew that my choice to calmly educate instead of recoiling and fuming was WORTH IT. Empathy is best modeled by parents though. Parents, PLEASE have an open conversation with your kids about children who are different. Empathy when displayed, is a beautiful thing. ‪#‎empathywins

The Untold Part of the Past Year

I've been writing this blogpost in my head for almost a year. I wasn't ready to share it for many reasons, but as always, my desire to be of any help at all to another struggling mom overrides my desire for privacy. I've cried a river writing this, re-living some painful feelings from this past year, but I pray it helps someone in their journey.

Here goes...When we first saw videos of Katie, before we met her, I saw many signs of institutional autism in her. What's "institutional autism"? It's a condition that happens to a infant/child who was raised in an institution/orphanage and had extreme neglect of nurture. It mimics autism in every way, with a lack of eye contact, "stimming" behavior, a lack of social engagement, etc. There is no way but time to know whether a child has institutional autism or typical Autism Spectrum Disorder. Institutional autism behaviors improve greatly over time, with nuture, and behavioral therapies.

With that said, rewind time with me to May 5th last year. Katie walked into the hotel lobby in Shijiazhuang, China and she walked into our arms forever. What an emotional day that was. Within 90 seconds, literally, of meeting my baby, I KNEW that her institutional autism was a way more prevailing case than I had hoped for her. I had a silent moment of indescribable anxiety. I felt myself NOT for a moment second-guessing our commitment to her at all, but instead more the way someone feels at the base of Mount Everest, and they are taking in the enormity of the mountain itself, and the challenge that lies ahead. In that silent moment, I remember gripping onto the Lord for fear of losing my sanity, and begging Him for peace and strength. I silently cried out to Him, "Lord, I NEED you to remind me right now of the hope that the child in front of me is the worst off in this moment that she will ever be, that from this point on, she will grow and blossom. She's my baby, and I believe we can do this, but I'm going to need your help every step of the way." That hope rushed over me and assured me, He will equip me, He will never leave me or forsake me. I fell in love with Katie that day, exactly as she was, but knew that in order for her to blossom more and more, it would be the most challenging thing I had ever done.

That summer was HARD. I've never felt so alone in my life. The adoption community didn't fail me, but I deep down felt I no longer belonged, since my child was NOT the poster child for easy or even a straightforward: "This is what your child's special need is ______" and that was that. Who would want to listen to an adoption advocate whose story is that their child's greatest challenge was way more than what they had originally known? No one else would sign up for that, right? Adopting a child with a certain special need but instead receiving a child with many more challenges. Most children in the adoption community DO have some challenges that are unexpected, beyond their special need but most are not as prevailing of an issue as Katie's. Other friends' deaf adopted children were starting to sign in complete sentences within a month of being home from China and as hard as I tried not to compare Kate to them, the differences were blaring. Katie WAS deaf/ hard of hearing, and her new hearing devices allowed her to hear nearly perfectly, but that's NEVER been her greatest special need. Her greatest challenge is to "break down the walls that Neglect built", and for us to enter into her closed world. The year of sign language classes seemed at times to have been useless. I could sign almost all day long to her, and she'd NEVER look up at me. I found tricks to get her attention for a fleeting 2-3 seconds: holding an apple to my cheek and signing "apple". I'd hand-over-hand, help her sign "eat" or "eat more" between every single bite, all day long. She seemed to not make a connection, for months and months. The deaf community didn't fail me, but I also felt there that I didn't belong. Sign language wasn't working for my child, because she wouldn't even look up.

The lowest point was an interaction in the early fall, as she had started attending the deaf school. She really hadn't made too much progress at all in 5 months of being exposed to language, and one educational professional administered a crushing blow to me that felt like the wind had been knocked out of me. I won't share what she had said, but basically she was believing it was "too late" for Katie's brain. She might as well have told a mother of a patient with stage 2 cancer to not bother pursuing chemo. Her statement messed me up horribly for days. I struggled to cling to hope. I knew I didn't believe that woman, but I struggled with the possibility that Kate was perhaps NOT going to get much better, that she may never learn to express herself well, and that she would live with us as an adult. I grieved HARD. I felt so many dreams I had for her crumbling and it scared me. I had friends and family (especially both our moms) speak Truth to me, and Hope, and I clung to that.

I love Doug...his words to me then and now still propel me in the hardest moments: he said, "I don't care if she doesn't meet someone else's expectations for progress. I don't care if the world doesn't understand her or see her as a success. She's our baby and I love her for HER. I enjoy HER. She ours and nothing anyone says about her can lessen how much I love her." Cara feels the same way about her sister. I also agree with him all the way to the deepest part of my soul. I think of those words every single day. Thank you, honey.

The best miracle happened that next week in October. It seemed as though the language part of her brain, that had never grown the neural pathways in her years of silence and without sign language, started GROWING and everything was "clicking". In Miracle Week, Katie went from signing almost NOTHING without hand-over-hand prompting and help, to signing one, then two, then ten new signs... THEN by the end of that week, signing a full sentence, unprompted: "Eat more orange please Mama"! Do you feel the amazement we felt then?!?!? Since then, she's blossomed in every area: in language (she's even recently started copying new signs without help, and produces around 40 signs regularly, with a constantly growing list), in social connection (she delights in running to us for hugs and kisses, unprompted, and really takes joy in our sweet Cara), in eye contact (in a CONTROLLED environment, I can say a "focus" word to her and she'll look up at me to watch me sign. She won't really look up at other people though.)

However, her deaf school and her therapy team there all agree with us that any and all progress they have made with her and I have made has been in a controlled, contained, therapy setting with most distractions eliminated, and a focused one-on-one ABA (Applied Behavioral Analysis)- type approach. The deaf school has been amazing and we love them but they simply don't specialize or really offer ABA therapy, and we all agree that's what she responds to the most and needs the most. We also needed a doctor's diagnosis that included "autism" to propel us forward in getting her the therapy she needs most. In February, I took her to a specialist and explained her history and her behaviors extensively. The doctor listened and evaluated her and agreed completely. For now, she has a diagnosis of  ADHD (our sweet girl never ever stops moving), and Autism Spectrum Disorder, recognizing that it very well may be institutional autism instead, (only time will tell), but that regardless behavioral therapies will help her dramatically. She wrote up her recommendations and now we are moving Katie to an autism program, that provides sign language to her as well, in a few weeks. (We can't give more details yet due to some things in progress). We are confident that behavioral therapies will help her greatly and that sign language will bridge her auditory processing gap for now. I have much more confidence in my ability to advocate for her as needed and that as long as she has her "#ibelieveinKatie" community in her corner, she'll get the best education possible.

The bottom line, I can honestly and unashamedly say that went through a grieving process this year (of what I thought my baby would be like) but I'm finally able to FULLY celebrate WHO Katie is, and enjoy her, without anxiety or pressure or other people's expectations weighing me down. We don't know exactly what the future holds, but we love our Baby Handan in all of her adorable quirky glory! :) She has more joy for life in any one given minute of the day than some people have in their entire lifetimes. We adore her.
THANK YOU for continually showing support and love for our baby too.

Today is Autism Awareness Day, and for our sweetie who loves all things blue... "Light it up BLUE!" :)