A Breakthrough!

Those of you who've followed our story since we adopted Zoya know that she's had some struggles along the way....just like most kids do. For Zoya, though, her struggles have centered around anxiety. Last spring she was officially given a diagnosis of Anxiety Disorder and started a tiny dose of medication to help with her anxiety. It has helped her A TON! I talked about her diagnosis and the decision to try medication in THIS POST. Check it out if you didn't read it before!  Take the time to read that post before you read any further or you might be confused by this post!

Yesterday, I was given a gift....a painful, yet amazing gift. After 3.5 years home, we're still on this healing journey and still learning things about our Zoya girl. Yesterday while the little ones were napping and Shawn was at work, Zoya asked to watch her "Ukraine Movie" as she calls it. You can see the video she's talking about HERE. We've watched this with her hundreds of times and I started by narrating her story out loud while she watched the video. I would say things like, "Mommy and Daddy were waiting to meet YOU in that picture!" and "That is the place you lived before Mommy and Daddy could get to you," or "Look! Zoya gets to go home forever with Mommy and Daddy." One thing I've always been careful NOT to do is insert emotions into my narrative or my story telling to her. Over time and watching the video so many times, she's been able to retell her adoption story. In fact, she LOVES hearing me tell the story, she asked for "Ukraine story" and when I tell it she usually likes me to hold her like a baby. I indulge her, I figure it's a great bonding and healing moment. Sometimes over the past year she's inserted some emotion into her story and said simple things like, "sad" or "happy" for certain parts, but that was about it. It's also worth noting that she did not like to watch the video when she was newly home...it usually made her upset, so we gave it a break for a while and then on each year anniversary home we would watch it with her. Sometime over the past year she has taken a much greater interest in it and in hearing her story overall.

Anyways, yesterday she was excited to watch the video...she watched it about 5 times narrating it each time and then moved on to something else. I video taped her watching it because she was so happy and doing such a great job narrating parts of her story. After playing for a bit she again asked for her "Ukraine Movie" and I let her watch it again, I'm so glad I did.

I put on the video, and walked into the kitchen (any other time she's watched it, Shawn and/or I are always with her watching it too). Shortly after it had started Zoya started yelling, "Scary!!!! Scary!!!! MAAAAAAMA SCARY!!!!" So I came running in having no idea what she was talking about. I said, "What's scary Zoya?" She said, "Born in Ukraine Scary!" I said, "why is it scary?" She just kept saying, "born in Ukraine scary!" and she genuinely looked scared. I felt as if the air was sucked right out of me and teared up. What do I say? I can't tell her it WASN'T scary because I know in my heart it was. We've always felt that Zoya went through some pretty traumatizing things, but have never KNOWN for sure and have never heard her talk about it. So I told her that Jesus was with her during that time and He kept her safe and that I was so sorry Mama and Daddy couldn't be there with her during that time. I told her I was sorry she was scared. I sat down on the couch next to her and just held her sweet little 5 year old self. In that moment she felt so little to me. As another picture came on the screen Zoya said, "sad" and I asked who was sad, she said "Zoya." I held her some more and she said clear as day, "I was so scared." A complete sentence of only 4 words but those words said so much. It was as if it wasn't even Zoya that was speaking....it was really one of the most surreal experiences I've ever had. I had to keep checking myself to make sure we were really having that conversation. I tear up just thinking back to it. The part of the video where we walk out of the orphanage gates with her came on and she got very very quiet with big eyes. When the picture of Shawn holding her up in celebration in front of the gates came on, she said, "always safe now, thank you Mama." I looked at her eyes, mine now full of tears, and held her face in my hands and just kissed her over and over and over. She just kept saying, "Thank you, thank you mama, thank you." I told her how much I loved her and reminded her she'd always be safe with us and she never has to be scared alone again. I told her whenever she is scared she will have a Mommy and Daddy to make her feel safe. I felt as if I was talking to a much older person, the whole thing was just so surreal. I never in a million years imagined at 5 years old, she'd have that conversation with me, EVER!

When Shawn walked in I still had tears in my eyes, sitting on the couch with Zoya and tried to relay to him what had just happened. She has since watched the video and said a few similar things, but not to the conversational level that happened yesterday! I could not get this event out of my mind...it was all so vivid but almost seemed like a dream!  A few hours after it happened, I remembered the night before I was thinking a lot about my Grandpa. I've blogged about him and how I believe his spirit followed us on Zoya's adoption journey HERE. I talked to my Grandpa as if he was right here sitting next to me and told him I missed him. I thought about the times I felt his presence shortly after his passing and through Zoya's adoption and told him how much I missed him and that I'd love to know he's still with me. I do believe this conversation with Zoya was a gift from him. You may think it sounds crazy, but I've learned to graciously accept these beautiful unexplainable things in life as gifts. I suspect the Lord used my Grandpa's spirit to facilitate this "breakthrough" of Zoya's.

Even though the conversation was fairly minimal, the words she did speak said so much....they confirmed the things I've suspected over the past 3.5 years. They gave me yet another layer of understanding to her underlying anxiety. I truly feel as if yesterday's events were a huge breakthrough on Zoya's path to healing, and on my path to help her heal. The fact that she was able to express herself and share her heart with me in this way is a gift I do not take for granted.  In those quiet moments together, she felt safe sharing her heart with me and the thought of that is so very overwhelming and magnificent. This new insight has been such a beautiful blessing!

Time and Love Are Not Always Enough

I've been mulling over this post for over a month now, and I'm finally sitting down to give it my best shot. I struggle with what I post because as you know this blog is public and the whole world can see it. You all get glimpses of our life with three beautiful daughters with Down Syndrome, but obviously I don't share everything! In the end (so long as I hit publish) I decided to write this post thinking maybe it would help another family who may be in the same type of situation. The things I decide not to share are for the privacy of our children, and I always write keeping in mind that my girls will likely read these blog posts one day. I never want to say anything that would hurt them.

It's definitely no secret to readers of this blog that Zoya has always struggled with anxiety, as long as she's been a part of our family, and without a doubt, I'm certain she struggled with it during her orphanage days. What will "fix" this anxiety? Time and Love, Time and Love, Time and Love, right? Time and Love have made a world of difference for Zoya, there's no doubt about that. She's made SO MANY STRIDES in the three years she's been home. She has far surpassed many goals that others have set for her and raised the bar on herself many times! She is so very smart, and friendly, and loving, and one of the most amazing souls you'd ever meet. But as we inched toward her "three years home" celebration, it was time to face the fact that time and love were not enough to "fix" her completely. Time and Love could not completely take away Zoya's anxiety. Time and Love taught Zoya that she can trust her parents. Time and Love allowed Zoya to become more confident and improve her self-esteem. Despite all that, Time and Love were not enough to take away the anxiety that, many times, ruled Zoya's (and our) life.

Over the past 3 years we've struggled right alongside Zoya with anxiety and fear that paralyzed her at times. Yes, every child has fears, but this went above and beyond what was typical for a child her age. Things like fear of indoor trees and plants, fear of stuffed animals, fear of chairs....each and every fear we came upon, we worked through and continue to work through.  The intensity of her reactions was so out of proportion to the trigger. Anxiety began ruling our lives. It was more stressful than we allowed ourselves to believe. It had just become such a part of Zoya that we just dealt with issues as they arose. Maybe people who know us would be surprised to learn of all this because we just began adapting life to avoid triggers, or using 100 exhausting strategies to curb her anxiety in public. Those that know Zoya well though, would agree that she struggled with anxiety.

Over and over we tried to figure out the reason for this anxiety and these fears. Having no birth family history, we have no idea if there is a family history of anxiety disorders....so it's quite possible that may play a role. I strongly believe the Lord put us in a position to see things during our adoption of Zoya.....things that still wake me up at night.....images of children being violently abused....an image of a sweet tiny boy having his head beat into the wooden floor repeatedly.....children from her very own groupa....at the hands of the very same people we had to hand Zoya over to at the end of our visits (taking a break to bawl my eyes out here).  I know the Lord let us see those things so we could better understand Zoya (once we came to terms with the fact that Time and Love wouldn't just magically make all the anxiety melt away).  At the time we didn't understand why the Lord would allow us to see those things that would forever steal a piece of our hearts. Now, I'm certain we saw those things to be able to better understand the root of Zoya's anxiety diagnosis. Looking back on any of the pictures from Zoya's orphanage, you can see many many indoor plants and huge stuffed animals-two of her fears. I can only venture to guess why she was so terrified of sitting in chairs for the first 6 months home. The point is, I know in my heart that Zoya's traumatic past shaped her brain in ways that can't always be undone easily (or ever). Coming to that realization is not very fun. It was a lot easier (and naive) to just believe that Time and Love would fix it all.

We worked tirelessly to try and help Zoya with her anxiety. Shawn and I sat down and wrote a list of all of Zoya's anxiety triggers and strategies we'd used to try and help her and it was then that I realized her anxiety was taking on a life of it's own. Several months ago, we decided to seek out professional help (we had seen a child psychologist in the past, but at that point we were still under the impression that Time and Love would be enough to make it all go away). We found an awesome group of professionals (therapist and psychiatrist) who took the time to get to know Zoya, listen to our concerns about her anxiety, and come up with a plan to help her. Zoya was officially diagnosed with Anxiety Disorder. While this was a huge relief (knowing we weren't crazy), it also made us so sad. Nobody wants their child to struggle, and clearly Zoya was continuing to struggle with anxiety daily. Actually hearing the diagnosis out loud didn't change Zoya, it just confirmed to us that Time and Love did not take that anxiety component away from Zoya. It made us so sad to know that she had to struggle so much with debilitating anxiety.

Zoya has been able to work through specific fears and overcome them, but it almost always seems that a new fear arises in place of the old fear that she overcame. She made huge progress during her dance season with strategies such as deep breaths, headphones, social stories, etc. BUT, the anxiety never went away. It manifested in other ways. To see your child acting hysterical at the sight of a gift bag with a stuffed animal sticking out is both maddening and just plain sad. Maddening because I just wish she could turn off the anxiety, maddening because she was freaking out over harmless (in my mind) stuffed animals, indoor trees, etc. And sad because what child is so afraid of stuffed animals that they cry and shake and pace for 45 minutes after seeing the thing? I know I'm not doing a great job explaining all of Zoya's specific fears that come along with her anxiety, but that's not really the point of this post. The point is, her anxiety was so bad that it began really interfering with daily life for her and for us. Sure she had many great moments throughout every day but we never knew at what moment the anxiety would kick in and take over. She was being held captive by anxiety.

The therapist and psychiatrist both agreed that the intensity of Zoya's anxiety was too high to benefit from most strategies that are typically used for children with anxiety. She couldn't even begin the Gradual Exposure process because the intensity of her anxiety was so high. Her brain had been setting off false alarms telling her she was in danger so long that the thought of facing some of her fears was enough to cause huge anxiety. That, paired with her developmental delay, made traditional cognitive behavioral strategies more difficult and less effective for Zoya.

Part of the treatment plan they suggested was medication. If you know me at all, you know (even though I'm married to a pharmacist) that I'd prefer not to use any medications on myself or my children unless I've tried everything else first. I'd prefer, especially, not to use this type of medication on my almost-5-year-old. The thought made me crazy. We looked back over the pages of strategies we'd used that we wrote down. Please don't leave suggestions for how to help with anxiety naturally (believe.me.when.I.say.we've.done.it.all!!!!) I tried to convince myself that her anxiety really wasn't so bad that she needed medication. But all it took was a single episode of her anxiety to remind me that this WAS a medical condition that was causing Zoya's quality of life to be impaired. It was our job as her parents to do everything we could to give her all the tools she needed to have the best life possible! So nervously (and after much research and consulting other parents who've made the same choice for their children) we made the tough decision to try medication. I definitely cried as I gave her the first dose.

The difference it has made for Zoya is miraculous. She is on the teeniest tiniest dose, yet it turns the intensity of her anxiety down so much that life has been much more enjoyable for her. We learned that a little bit of anxiety is a good thing (haha) and until we got the dose right, we had a fearless and frightening 4 year on our hands). Her confidence has soared. Her anxiety is not gone, but many days go by where I forget that it was ever such a huge issue! It makes my mama heart so happy to see her interacting more, exploring more, enjoying more. I'm not saying this is the answer for every child in Zoya's situation, but I can confidently tell you that it has improved Zoya's life greatly! Has it taken away her anxiety completely? No, only the Lord can take away her anxiety completely, and I have no doubt He is fully capable of doing that, but it has made a world of difference for her!

I know by posting this we'll face critics, but those critics don't know our child, and it's not their job to make decisions for her, so those people don't matter. It's my hope that this post might help other families in the same situation, and to give you some more insight into what an amazing child our Zoya girl is and how much she's overcome!

Dance, baby, dance! 

THANK YOU! and Questions Answered...

Wow....I am humbled by all the comments and emails from all of you followers!!! You guys rock!! So many questions, thoughts, and ideas to look into....and so much support! My favorite comment was from anonymous, "I can say as a mother of 7 that kids are just nuts. I'm not kidding, if adults showed the type of behavior that I've seen in my 16 years of parenting my totally average kids, they would be on anti-psychotic medication." Right on sister! As I've said a million times, the hardest part of parenting a child with down syndrome who was adopted from an orphanage is trying to figure out what is causing some of the behaviors we see....DS? orphanage? toddler?  Is it totally normals stuff other 'typical' kids face too or is it above and beyond that? Having not parented any children before Zoya I'm always wondering what is normal and whats not. My instincts tell me theres something more than just typical weird kid behaviors, though it did make me feel so much better to hear some of the stories you left about strange and unexplainable behaviors in your own kids or kids you know.

So to answer some questions.....

Do you use melatonin?
Yes...we have since we arrived home with Zoya and it really does help her to settle down and fall asleep. She sleeps so well the first couple hours, and then starts the tossing and turning. We've noticed she goes through cycles of sleeping well followed by not sleeping well. When she was first home she NEVER slept soundly. Then she'd have a few week period where she'd sleep well, followed by a long period of restlessness. The restless periods have gotten to be less and less the longer she has been home, but we still see the cycle of restless sleep....thankfully the restful sleep periods are lasting longer and longer...we just happen to be in a restless period right now. That makes me think its likely more anxiety related than medical related, but I don't know.

 We had better results with a Magnesium supplement.  It is a natural stool softener and worked wonders.  Ours was in powder form from Kirkman labs (mail order or we would purchase it at our Dr. s office).  Another way to get magnesium into their systems is through a long soak in an Epsom Salt bath.  We also noticed that after we started the oral Magnesium supplement, our son seemed to sleep better through the night.  (Thank you Lord!)  I believe (and I've read) that it has a calming effect on the nervous system.
Thanks for this info...Zoya sees a nutrition specialist and I will ask about the magnesium. She takes calcium nightly which really helps to calm her as well...not sure if it has magnesium in it or not. I will definitely check into this. And cool advice on the epsom salt bath..thanks!

I know it sounds bad, but could she be sleeping too much (during the day)?
I really don't think so because she gets very crabby and tired and will lay on the floor and yawn and rub her eyes if it is past nap time some days. Some days I think she could skip the nap and be fine, but most days I know she really needs it. She falls asleep at night almost as soon as I put her in her bed.

Have you had her checked out physically lately to make sure there's no underlying illness such as blood sugar issues etc?
I don't know that there's ever been a thought to check blood sugar levels unless that is part of routine blood work that she would have had done.

Maybe that's just a coincidence, but when my son's doctor says to be careful to recognize the symptoms of hypothyroidism, she mentions the symptoms you mentioned above. We check the hormones once a year. Have you had this testing done?
Yes she is up to date on her annual thyroid testing...she will be due again in November. Everything was normal last time.

How does her anxiety manifest itself? Crying? Restlessness?
CRYING....LOTS OF CRYING. Funny thing is she pretty much had no idea how to cry when we met her. Then one day she realized her needs are met and she gets attention when she cries and she can cry to communicate with us. Then I wished she never learned to cry...LOL jk. Then she started having uncontrollable crying....like she could NOT get herself under control. She is learning to control her crying a bit better, but sometimes I feel like its a ticking time bomb never knowing when she'll just start crying due to anxiety....like if we go out to eat or something she is fine one minute and then has a look of terror the next. I went through a little bout of anxiety years ago and I remember feeling so out of control of my emotions so I wonder if she feels the same. We are trying to give her lots of tools to calm herself down when she starts getting upset. Like requesting her happy pillow or trying to let her feel in control by giving her choices.  Often she will ask for us to pick her up and then she feels much safer, but lately even THAT hasn't been enough at times.

Does the anxiety go away? Like, at speech does she relax? or is she anxious the entire time?
The anxiety usually lessens usually doesn't completely go away...she is always "on guard" in new situations. Like tonight at speech she was anxious at the beginning, then started to relax quite a bit, then every strange sound she heard (people walking or sneezing) she tensed up and got scared. Sudden sounds have really been bothering her lately and triggering anxiety. My brother sneezed really loud this weekend and it scared her so bad that she wouldn't even go near him until the next day LOL.

Also, I meant to add we are taking a break from therapy for the summer. Maybe a short break might be good for you, too?
Besides speech therapy we don't do any other outside therapies. We have been talking a lot about what we can cut out because we pretty much went from all in home therapies and not much else out of the house to outside speech therapy twice a week, swimming lessons, AND preschool, which could be a cause for the increased anxiety we are seeing. Too much too quick for Zoya. Swimming lessons are over, preschool is just once a week (but will be 3 mornings a week in the fall-we are working on a plan to slowly ease her into it).

From what I understand, it's recommended that every child with Ds have a sleep study by the age of 3. Apnea is just so prevalent. AND What does your doctor say about sleep apnea? Up to 75% of kiddos with down syndrome have sleep apnea (source is Up To Date)and it causes a myriad of problems.... Might be worth checking out- I believe that every child with down syndrome should have a sleep study done due to the likelihood of apnea.
I understand that as well (although no thanks to any doctor we've ever seen even bringing it up)...I found that fact out on my own and asked her primary ped. about it and she said a sleep study would be a nightmare for Zoya (which I totally agree with) and unless she is having issues that would point toward a sleeping disorder that she didnt' see a need. When we go back to the DS clinic in the fall I'm going to ask about it. But usually when doctors ask how she sleeps I say GREAT bc she sleeps so long...I tell them she has on and off cycles of restless sleep but nobody really seems concerned. She only snores if she has a cold...I know apnea can be present without snoring contrary to popular belief....but the usual options to fix it are to have tonsils and adenoids out and/or a c-pap machine....I really don't see Zoya keeping that on throughout the night. 
 I would recommend trying prune juice mixed with apple or orange juice. You can serve it cold or warmed up a touch. A small glass a day surely does wonders- a doctor I followed gave this in the hospital before starting any medications :)
We do diluted apple juice....the only thing about juices is the sugar content...Zoya does NOT do well with sugar so we try to keep the juices to a minimum...even natural fruit juices don't go over well with her. We tried regular prunes but Zoya gagged on those.

Anxiety- is one of the physicians that you are looking at talking to a developmental behavioral pediatrician? I rotated with one of these and he was FANTASTIC!!! May be something to look into if you are interested- in general they give parents strategies to deal with the behaviors to help the child cope.
The place we are hoping to get into in Cleveland has a DBP....this would be helpful (I hope they can give us ideas we haven't already tried).

So first off speech... I am in Ohio, but near Cincinnati so opposite ends here, but we have Help Me Grow and once approved (which DS make it automatic) they send a ST out to your house weekly. Is that not an option there?
I keep getting this question A LOT.  Our state does in home therapies up until age 3...Zoya was getting speech therapy once a week for an hour in our home. When she turned 3 services were turned over to the school district. In her IEP she has speech thearpy listed once a wee for 30 minutes...although most of that is not a pull out session...it is working with her in the classroom and helping classroom teachers know how to help her better with her communication. There is some pull out but definitely not enough for what Zoya needs. We started taking her to outpatient therapy once a week where we live and I still wasn't really seeing much improvement or progress like in all her other areas. That is when we decided to look into apraxia and the PROMPT therapy.  We had a private evaluation done by two PROMPT trained therapists who impressed me a whole lot (posted about it a month ago maybe...too lazy to link it up right now). They concluded Zoya has "severe motor planning disorder which is greatly limiting her ability to verbally communicate"....AKA apraxia. Play therapy does not work for apraxia. This specific PROMPT approach (google PROMPT therapy) is designed for kids with apraxia and after tonight's session I'm even more convinced this is THE ONLY WAY we are going to see improvement with Zoya's speech...this therapy is AH-MAZ-ING...it just stinks we have to drive so far to find a trained therapist. There is simply no substitute for this therapy.  Other mamas who've gone through the PROMPT therapy can chime in here with its awesomeness! Here is a blog (although I never commented) that got me really thinking about Zoya having apraxia and this is where I learned about PROMPT therapy and began researching it.

And just to add...as far as the poop situation....Zoya had awful diarrhea when we first brought her home, we finally did the gluten free diet and it did wonders....then she started having some constipation here and there...nothing horrible until last week when her teacher called me and said she was very worried about her. 3 hours later and she finally worked it out after miralax, 2 cups of apple juice, and a laxative...poor thing...then she gets scared to go the next time bc it hurt so bad...psychological constipation ha! That is why we decided to try the miralax but sheesh I'm thinking we could drop three grains of that stuff in her drink and it'd be enough after what happened these past few days...sheesh!

WOW THAT WAS A LOT! Thanks for all your comments and thoughts and ideas...you guys rock!

Off to prepare for our special visitors tomorrow....wait til you see whose coming!!!!!!!!!!!

The Tough Stuff

Today I'm gonna play the "parenting a child with special needs is really hard" card. Or maybe it's the "trying to get the help your child needs even when you are a very knowledgeable parent with a background in special education is near impossible" card.  (sigh) So go ahead and click the x at the top of your screen if you came here for cute pictures and happy thoughts today!

I've talked about Zoya's anxiety before. I've talked about having post traumatic stressors, possibly PTSD from orphanage life. She has specific triggers that make her very anxious and I just can't figure it all out. People with DS are more prone to anxiety disorders as well. So sorting out the cause of the anxiety and trying to figure out how we can help her has been difficult to say the least. Zoya is very comfortable and happy when she is home with us almost 100% of the time...its other places and people that make her anxious. I can't quite organize my thoughts fully with the situation and need some help...some professional advice....someone who will meet with her and us and give us an opinion of what is causing the anxiety and how we can help. We've tried all I know how to do. It seems to me the anxiety is getting worse and not better and I feel like I'm failing my girl. I will go to the ends of the earth to get her the help she needs but today I feel like I reached the end of the earth and fell off! LOL. I'm ready to waive the flag of surrender on this one.

So I contacted the fabulous doctor we saw at the adoption clinic in Pittsburgh when Zoya was first home.  She gave me a contact number for a group of professionals all in one place including a psychologist who specializes in PTSD, a Dr. who specializes in DS, and another who specializes in adoption. Well trying to call them and coordinate an appointment was harder than trying to get a hold of the President. I don't have energy to go into all the details....just hoping they call me back and we can get something scheduled and someone can help!

One question I do have, if anyone can answer.....Zoya sleeps 12 hours a night and usually naps 2 hours, sometimes 3 hours. I'm SO not complaining...but even after sleeping 12 hours some nights, like last night, she still seems tired.....tired in the "tired and cranky" sort of way....not always but sometimes.  I wonder if she is not sleeping well...she's always been a restless sleeper, but her ped. said it was nothing to worry about. I could request a sleep study but with her anxiety I might rather be fed piece by piece to sharks. Could the anxiety be a result of not sleeping well if she does has sleep apnea or some other sleep disorder? I suppose the only way to find out is a sleep study. Anyone have experience with anxiety cured by fixing a sleep disorder? It's a long shot but it can't hurt to ask...

And to top it off we have speech in Buffalo tonight, which is proving to be quite the ordeal....we go during rush hour which is the only time she has available (other than Zoya's nap time which would be even worse) and its been taking 2 hours to get there. Last time it took over two hours and then Zoya cried the first 10 minutes while I tried not to cry myself.  She needs this type of therapy, I can see progress already, but at what cost? When do we say enough and just hibernate in our house and enjoy life? I want her to be all she can be, but I want her happy too.  This might be the hardest part of parenting...knowing when to push and knowing when to lay off.  Finding that balance is hard.

And then there's the poop.....oh I've been up to my elbows in poop. Zoya had some pretty bad constipation a week ago so we started her on Miralax....Ummmm NO.THANK.YOU.MR.MIRALAX! This is even worse :( I've never experienced anything like it in my life! 4 changes of bedding, 4 loads of laundry, and 4 baths....in the past 2 days...well lets just say this is my new diet plan and its working fabulously well! AND I'm hoping its all out of her system before we get in the car and drive 2 hours to speech and 2 hours back tonight....

And this concludes the session on "I'm-having-a-bad-day-101." Thank you for your time...please feel free to fill out the evaluation form on your way out.