Wednesday, August 10, 2016

Fighting Fear: At the Balloon Festival

We don't tend to do things on a whim over here. Like, ever. So when Jer and I both woke up a few Saturdays ago and announced to each other we should take the kids to the hot air balloon festival we felt empowered.

We packed the kids in the car and made the trek only to be informed that the balloons were not at the festival. They were to return in the evening. We were encouraged to stay for rides and helicopter rides. We thanked the kind parking attendant who told us this before he took our cash, turned around and left. I felt enormously disappointed and slightly panicked. What are we going to do now? 

Jer suggested we grab lunch and take the kids to a park we love just another town over. My anxiety crept up slowly as Mimi began repeating the word "balloon" in the backseat. We pulled into the park to find a massive crowd of people gathered for a large children's festival. It seemed there were no parking spots in that tiny parking lot. We parked in a handicapped spot (we have a card for AJ) and I was still worried about him walking so far. My brain was so scrambled I wasn't tuning into the fact that we have a wheelchair in the backseat. 

We've only used the wheelchair for days when AJ is sleeping at school and is too incoherent to walk out of school when I pick him up. We also used it for a long trek during family photos. These distances may not be long for you and I, but they are for AJ. I haven't quite gotten used to remembering much less using it more frequently. 

Our detour that afternoon led us here:




We enjoyed a fantastic lunch with fantastic weather and headed home. Later that evening we one-upped our boldness and headed back to the balloon festival. As we drove along the main road and saw the mass amounts of people I felt that all familiar panic set it. So.many.people. Let me clarify that I am fine in larger crowds. My children are not. We were directed to a make-shift parking lot (a field) about a block from the festival. I noticed some people were sitting up on the hill in chairs so we made the decision to stay by the car and just hang out. Surely we'd see the giant balloons floating back down in the sky from there.

We parked and I realized it was time for AJ's medicine. One thing that I've never gotten used to is traveling with his tray of medicines. I'm not really sure why. Something about the absence of a counter or flat surface makes me, you guessed it, panicky. After giving him his medicine I sat in the car for a few moments to compose myself. Until I noticed AJ seizing in the backseat. After a cluster of seizures, I became completely unglued. Who does this?

After his seizures slowed I spread out a blanket next to the car and we waited for the balloons.

The balloons that never came.

For two hours we waited and waited and realized somehow we had missed them. Perhaps they flew in early? Two hours my sweet Mimi asked for those balloons while my anxiety shot up higher and higher. But after a while I began to witness and experience some things that were beyond the beauty of colorful balloons in the sky.





We had time just as a family.

Sweet precious time without any distractions.

Towards the end of our time in the field we walked down to the corner and saw the balloons bouncing up in the air a bit, firing just enough to make the balloons glow in the sunset. I was beyond disappointed that my girl, who can't see that far and loves balloons, was not able to see the hot air balloons. She needed to be right there in the front rows to be able to see the details of the balloons. Being in large groups of people causes her panic because she can't see what's going on. That much movement is very scary for her. So we chose to stay in the field. She couldn't see the tops of the balloons bouncing in the air because of her low vision.

I want so badly to give both of my children access to so many things because of their pasts. I don't want to give them the world by our culture's definition. Culture says I should buy them this because I didn't have it or do this because I didn't do it and want better for my kids. Culture tells me to do it all because we have access to it all. I want better for my kids in a different way. I want to give my children the simple and beautiful. I want to give my kids the opportunity to go to a local community event for free. To see something simple and beautiful. I wanted to see my daughter's eyes light up in seeing gigundo balloons in the sky. The simplest things make her happy. I want to see my son giggle and smile. I don't want my children to suffer. Anymore. I don't say that out of fear that they may some day. I know they will. I say this because they both have already suffered enough. This little trip to the festival seemed beyond simple. This wasn't a trip to Fiji. So why didn't it end up being simple?


I don't know.

But I do know that we did it.

We stepped out of our fear.

And I'm proud.



Tuesday, July 26, 2016

Fighting Fear

A few months ago I was sitting in one of our monthly Team AJ meetings with AJ's school team. As I was explaining his two most recent diagnoses (no executive function and little to no impulse control), one of his teachers asked for clarification of what those things meant.

It basically means he has no concept of right or wrong and doesn't understand consequences. It also means he has little to no control over his impulses. While the impulse control may improve a teeny-tiny bit over time, it will not be dramatic. Medication can help calm the impulses. However his impulse control will most likely stay static or consistently stay at the no control status.

"So what strategies did the neurologist give you?"

None. We cannot change brain damage.

"So what do you do when you go to Target or other stores?" the teacher asked.

We don't go.

When AJ was younger it took me weeks to work up the courage to go to the grocery store with him. His sensory needs were beyond and everything about the grocery store was overstimulating. This was beyond tantrums and tiredness and the typical hardships of taking the kids to the store. I was so anxious there was no way I would be able to concentrate on my list and actual make the trip productive. Even if it was just for milk, I wasn't going to risk it. The day we made a successful grocery store trip I was over the moon and felt like I had won the freakin' Olympics.

I've found myself in a similar, yet different place with this idea once again. I have become an expert on talking myself out of something by the next day or the end of the day or whatever it is. Because of fear. Fear is the biggest F-word in my life. Fear of situations I cannot control with a child I literally cannot control.


The risk evaluation is an important piece for me. No risk, no reward, right? Except in our case the risk can turn into a larger risk. I straddle the place of staying safe on the bus and jumping off the cliff with the rest of the group. Daily. Certain things must be strategically planned out. Other things can fly-by-the-seat-of-your-pants approached. But there is never one or the other, it always a combination of the two.

Grocery store shopping, or pretty much anything for that matter, now poses new challenges. AJ no longer fits in the cart. His brain will not allow him to stay with me if we are walking. He will grab everything under the sun without stopping. He will walk over the broken glass of salsa jars he's swiped and keep plowing on down the aisle. He cannot sit in the large area of the cart because 1. we live in times where what we did as kids is now considered dangerous and 2. he would impulsively dig into every single thing I would put in the cart. Many stores now offer these carts for special needs children. Our stores are not allowing these yet. If I take him in his wheelchair where will I put all the groceries?

The logistics alone are enough to numb me. 

I can do everything right on my end, but I absolutely cannot control his brain.

Add the fear and I'm done for.


Lately I've been thinking that we've got to take some risks. Maybe it isn't going to the grocery store just yet, but perhaps its planning out a trip to the library. Or going for ice cream. Maybe its giving myself grace to process the aftermath of the trip. Maybe its giving myself grace that its not my fault if the trip is a disaster. Maybe its giving myself to breath, rest, and then try again.




Friday, July 8, 2016

10

Ten years ago a tiny little miracle was born in a small clinic in Escuintla, Guatemala. He should not have survived. Almost nine years ago he came home to America. His body was in crisis-hidden to the naked eye. He almost didn't survive. The gravity and accomplishment of AJ turning 10 has had us in awe for the last week. Sometimes, words just aren't needed.


This is 10.




Thursday, December 31, 2015

Her First Year

She came barreling down the hallway with her teacher with that smug look on her face.

I am special.  I am getting special treatment.

She tolerated me holding her simply because I was giving her attention.

We spent no more than a half-an-hour at the orphanage saying goodbyes and suddenly we were in the car with this stranger of a three-year-old.

She drank two bottles of water and every single snack we had brought for the almost four-hour car ride back to the capital. When we arrived at the passport office she lost it, screaming uncontrollably and wondering who we were and who those creepy people were.  They were speaking Bulgarian, but they were still creepy and ordering her to stand still in a box-like structure to take a photo.

Dinner ended up in our room as she screamed uncontrollably in the crisp, white, well-lit when we sat in a booth in the restaurant in our hotel. Bedtime brought on a stronger pair of lungs and behaviors. They had warned us she didn't like sleep. I found myself in the bathroom most of the night, crying in the shower and texting family and friends. The adrenaline had faded and reality had arrived.

Our time in country was precious and bittersweet. We had the privilege of watching her let her guard down a little bit each and every day and more of her personality emerge.  She was on a natural sedative (yes, I really just said that) and while she took it like a pro, we didn't see any changes. She enjoyed going downstairs to the restaurant to eat....and eat, and eat, and eat. She enjoyed outings-although in very small increments.  Going from one building all your life to multiple locations with strangers was not her cup of tea.  Honestly, nor was it ours. We all needed the downtime. Her brother was struggling here at home, which made the distance bittersweet. Loving on one baby while your other is suffering 5,000 miles away is not cool.  Oh wait, we've been doing that-we just traded kids.

She didn't have much language, except for calling out for her teacher and saying "Da" when she'd hand you something/want something. She was a copycat and repeated English words very well.  It didn't take her long to learn the words up, water, and bath. The first issue we saw with her vision was her consistent walking into the glass walls of the restaurant entrance.

Our first flight to Amsterdam proved to be everything I had prayed it wouldn't be.  The moment passed security and wiped the sweat from our brows, I felt that familiar panic. This precious sweet girl, whom we love more than she could ever fathom, is in the middle of one of the biggest changes of her life. She had no idea what was happening. She screamed from the moment we boarded to the moment we landed, with the exception of a 10 minutes exhaustion nap.  All of the memories of our trip home with AJ flooded back, as did my PTSD I spent years in therapy battling.  We were there for her, even though she didn't want us to be.

The flight to Minneapolis from Amsterdam was remarkable. I held my breath most of the time and watched her dig into slight contentment of the situation.  She was thrilled with the constant meals on board. By the last flight she was a pro, climbing in her seat and she was OUT even before we took off.  She came home exhausted, sleeping barely an hour in over 24 hours. She came home much more fragile than I had expected her to.

She motioned for the stroller as we deplaned. As much as I wanted to hold my baby girl and greet those who came to welcome her, she needed to just be. She looks irritated  and exhausted in photos from that moment.  No doubt she was.


She sat quietly, although confused, in her car seat for the first time. Folding her hands gives her comfort. When we arrived home she was calm, until our dogs came inside.  Understandably, she was terrified. After they returned to the backyard, she was fine.  She walked into her room as if she had been there before.  She asked for pajamas and was out cold before I even hit the floor to sit next to her toddler bed and make her feel safe.


She met her brother the next morning and was, for the most part, not impressed. They began to notice each other throughout the next few days.



She made fast friends with our black lab and shepherd, giving them treats and learning that they really are just gentle giants. She had some fear when they would be in her face or come around over her shoulder, which we attributed to her vision.



We took her off the natural sedatives she had been on once we were home.  We don't believe they ever did anything for her.

She didn't need sedatives, she needed
a family and consistent love.

She saw the ophthalmologist a week later.  We learned that she is extremely lucky blessed as far as the colobomas in her right eye.  It is pear shaped, which misses the center of her eye, giving her vision in that eye.  The coloboma in her left eye is quite larger and is why she has no vision. She has light perception (can tell when its light out/dark out/lights on/lights off) in that eye. Her vision in the right eye was estimated between 20/100 and 20/400.  Because of the type of low-vision she has, it is not easy to figure out what her eye sight is.  Of course it isn't. 20/200 is considered legally blind.  We were encouraged to return in a year or so when she has more language and can tell us what she sees via the symbol charts they use with kids, etc. The ophthalmologist was very impressed with her and how well she uses her vision.

While we were waiting for her eyes to dilate, she returned to the very chaotic, wild child we saw in the orphanage. A group of children came out of one of the rooms into the waiting room and she changed instantly. A few moments later the group ran back into one of the exam rooms and she ran behind them laughing like a hyena. We knew she wouldn't do well with group of children.  Not yet, at least.

A few days later we were sitting in front of several medical professionals at her international adoption clinic appointment.  She received raving reviews. We were told how lucky we were. We walked out of that appointment stunned.  Wait a minute.  No specialists to consult?  No medical tests?  No therapies?

Something has got to be wrong.

Because it just does.



We attended church much quicker than we ever anticipated, including Christmas Eve service. Christmas was fun, but she wasn't sure about all that was going on.  Rightfully so.  We played in the snow, she wasn't sure what it was.





She didn't smile very much the first month she was home. It was a large period of adjustment for all of us, much of which Jer nor I remember much of. She refused to let me rock her and she only wanted to be held on her terms. Her personality and smarts emerged a bit more each day, as did her defiance with the word "no" and anything else that was out of her agenda. She had/has some mild sensory issues, displayed in hand-flapping, rocking, and some other behaviors when she came home that subsided. The very worst was the first night we had her in Bulgaria. I spent quite a bit of time with our social worker talking about our concerns. Children who were favored in the orphanage come home with their own set of, ahem, issues.  Bottom line, she was used to acting out, knowing exactly what to do to get attention, receive special attention....the works. If we didn't work on this with her, it would lead to a lifetime of her a manipulative person with poor relationships. The word "no" would spark 45 minutes of full-on meltdown along with some other rather ugly behaviors. Her brother's issues were all special needs related-not emotional. This was a whole new ball of wax for us. Toddler adoption is NO. JOKE.



Spring brought on her 4th birthday, which we celebrated very low-key. As much as this Mama wanted to throw a big shindig, our girl is a low-key gal. She had a special drink at coffee shop with mama and we painted our nails. We have a family tradition of ice cream cakes for celebrations.  She was rather excited....







Spring also brought on evaluations by our school district and her first IEP. Knowing her history, we fought for her to obtain a mixture of services in a mixture of locations.  We knew putting her in an early education classroom was going to be a disaster.  Still, she needed and craved that learning component.  She received special education instruction in the community (we'd meet her teacher at the park or library), vision services at home, and speech in the school setting. She didn't not allow new people into her world easily.  It proved difficult to earn her credibility and for her to respond to outside authority.  We should know, we had to learn it and we're her parents.


                                                               
Left Eye vs. Right Eye via sight simulation glasses

{I wore them as much as I could 
to see what her vision is like}

I watched from the sidelines as she struggled with large open spaces (hallways of the school and the entire setup of the children's area of our library) and ran like a banshee. Anything that was a wide open space like this hallway in the orphanage-she'd RUN.



I would sit and text friends watching the deterioration and disturbances that were happening inside her little being due to her past. I felt all the feels in each of those 45 minute sessions. I intercepted when necessary, but really tried my best to help her understand that these were her people too.

Honestly, I wasn't sure it would ever change.

No one truly understood.  To be honest, I often felt like a four-headed monster trying to explain her adoption baggage. I was never making excuses for her, although my words were often taken that way. This was my first real experience with the lack of understanding of adoption in the school system. We cannot undue years in just a few months, people.

We can never undo it, we move forward.

Unless you saw her, in that environment, you don't get it-which is why I am trying to explain it to you.  Sincerely,  Heidi


Indeed things did change. 




Her very last day of school she walked magnificently to and from the speech room with her therapist. On her very last day of the library, she rocked each step like a champ.  We had learned that front-loading works very well with her and that we need to explain things to her before, during, and after...everything. She has learned English very quickly and is a quick learner. Most of previous language was receptive.  Her vision teacher often tells me she's constantly challenged because she does things she shouldn't be able to do.

Of course she does.

We also discovered she has echolalia.  This is common with children who have low-vision. It has proven to be an asset and to be honest, a nuisance. It both helps and hinders here depending on the situation.  She repeats what she hear and often gets stuck on whatever she's saying.  In a positive light, she repeats the proper sounds and pronunciations with precision and can repeat exact intonations like a boss.

Her first summer home was action-packed. She experienced standing in and listening to the rain.  She was fascinated. She discovered the trampoline. We celebrated her brother's birthday. She figured out how to pedal a bike all by herself. She went to her first parade and had her first picnic. We learned of her fear of being in wet clothes and being immersed in water (lake). We spent a week with family at a lake resort and she had an absolutely blast. She loved smores, bubbles, seeing puppies, and the old playground. She loved cuddles with grandpa, crafts with grandma, sitting in the raft in the lake, and ice cream with her brother.










We had toured and chosen a school for her 4K placement for the fall.  As a way to practice and get to know her environment, she attended some summer sessions.  A few days before the fall semester began I met with her teacher who told me they didn't think their school was the proper place for her. Its still a very sore subject for this Mama. What I will say is that she was completely misunderstood and was not wanted from the moment she set foot in that building.    She attended for a few weeks after which we pulled her and sought other placement. The last thing she needed was another disruption in her life.

What came of that disruption was pure redemption.  She is now at a private school with a small class size and SOARING.




She was challenged by the group events her class participated in, from the pumpkin farm and
trick -or- treating.  She rocked both of them.



It is such a privilege to witness these firsts in her life. 

We have worked through a fear of wind and a fear of splashing (because she can't see either, they are difficult for her to anticipate). A few months ago I learned that the caregivers at her orphanage never let the kids go outside when it was windy as they believed it would make them sick.  The girl had literally never felt the wind in her face before.

She has learned to take turns, stand in line and wait, and express her emotions.  She learned to come to us for comfort and fall asleep in our arms.  She learned that her brother is different and does not talk. She began to share with me the events of her day and tell me who her friends are.  She seeks her brother out and misses him when he's gone. She thrives on routine, but is flexible when it changes...as long as we explain what's happening. She began to ask about her grandma and when her grandparents in another state were coming. She gained a preference in TV, she is Dancing with the Stars biggest fan. Her concentrated/examination face looks like she's giving you the stink eye. We've learned that large groups make her nervous as she can't see everything that is going on. She loves to watch and HELP me cook and bake. She loves to help me do everything. She's grown so much that its impossible not to recognize it.








A few weeks ago she was evaluated by a low-vision clinic of providers. This was an awesome opportunity.  She did so well and showed how much she has grown in SO many ways since her first eye exam.  We learned about technologies/adaptations that we can use to help her maximize her sight and again, didn't get a clear answer to the level of her vision.  That will come. She's fascinated by magnifiers and let me tell you, navigates iPads and iPhones just fine.  She has a hard time with books that don't have enough contrast example The Mitten by Jan Brett, or those board books where they have images of every day objects.  Often they match the color of the item to the background, so a pear on a green background, which proves difficult for her.  In the same way, she doesn't always realize there is more sour cream on her white plate or applesauce in her yellow bowl. We're working on print recognition that is about 2" inches in size. The jury is still out regarding braille for her. She is recognizing letters, numbers, and spelling her name.



Christmas this year was magical as she was really into singing at her Christmas program, celebrating "Jee Birday", baking cookies, and sprinkling the reindeer food on the front lawn.


Every update I asked the orphanage for stated she was 22lbs.  At her medical exam in Bulgaria she weighed 26.5 pounds and was 34.5 inches tall. She was snuggly fitting into 2T clothes on pick-up and in a tiny size 5 shoe. . It is often true that once they know the child has a family and that they will be leaving, they feed them better.  Not great, but better.

After a year home, she has gained 8 pounds making her 34.5 pounds, is 39 inches tall, and has gone up four clothes sizes and four shoe sizes. She now wears a 4/5 and a size 9 shoe. Her hair reaches all the way down her back and has a luster, shine, and curl to it that was not there in the dull-brown we had when she came home.  She has some serious eczema which we manage to keep at bay most of the time. That decreased dramatically with proper nutrition and hydration.  She has a sweet tooth and is not a picky eater.  Vegetables have been her biggest challenge, but in size/texture rather than taste. She was used to casseroles and soups with minute pieces of vegetables, if any. Donuts are her absolutely favorite food. She loves music.  She does not like books that sing or stuffed animals that sing. She has a fear of elevators. She loves to line things up and stack them high.  She loves to figure out how things work.



Parenting her has been the polar opposite of her brother, in more ways than I can count. I still find myself looking over at her and wondering what it was like when she wasn't here.  Part of what has been challenging is the ease at which she adjusted to so many things, its like she's always been here. Lest we forget that indeed she hasn't always and we need to remember that. And sometimes, I miss the good stuff because we are in the thick of all the things.  I do, I'll admit that. We have been so blessed by this little ball of light and redemption. She's much like her brother in that respect.  They both bring so much light and love. We can't wait to see what the next year will bring for her.


There is no shortage of miracles in this girl.





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