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Making the Grade: Special Education and Adoption

September 30, 2016 by nohandsbutours 0 Comments

It’s September which means school is back in session. And this month at No Hands But Ours, it’s all about Education. From IEPs to OT, from homeschooling to Early Intervention, we’re covering the gamut of educational topics and how they relate to the unique needs of the children who have joined our families through adoption.


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I was asked to write this post on Special Education, and I’ve written it several times over.

At first I was trying to explain the standard process of my Special Education experience. But – in writing this – I discovered several important lessons I’ve learned over the past four years….

My perspectives on Special Education are that of a mother and an educator. I taught for 18 years in the Texas public school system. We have five beautiful children, and we attempt to meet each of our children’s educational needs on an individual basis. Our biological daughter Molly is homeschooled by my mother, a retired school teacher. Our adopted son Timmy is in general education at the public school near our house. And our beautiful girls from China – Savannah, Kelsey, and Emily – are all in different special education programs within the school district in which we live.

Savannah’s special needs are autism, congenital hypothyroidism, non-verbal, and significant cognitive delay.
Kelsey’s special need is cerebral palsy, and she is non-verbal.
Emily’s special needs are encephalocele, severe epilepsy, blind, deaf, significant brain damage (missing corpus callosum and 9/10 of her cerebellum), scoliosis, and non-verbal.

I believe that 99.9% of educators and administrators have children’s best interest at heart.
I believe that all children can learn and make progress.
I believe in a flawed educational system that still does good.

……………..

Savannah

Savannah was three when she came home from China. She weighed 11 pounds, and she functioned on the level of a two month old. She needed so much more than we could give her on our own. We had her evaluated through the school district and anxiously awaited the results. The IEP was called three months later, and I was nervous. As an educator, I had been in many IEP meetings but going in as parent? So scary. My best advice for IEP meetings…. wear the strongest deodorant you can find and take a plate of homemade chocolate chip cookies to share with the IEP committee.

Savannah’s IEP was in a conference room filled with 14 people… administrators, therapists, teachers, and us. Three words: Peace. Offering. Cookies. With that said, I was still overwhelmed in the IEP. It is difficult to hear anyone talking about your “baby”.

I heard the following:
Delayed.
We are unsure.
No one knows.
No one has really seen a child like this without early intervention.

I began to feel defensive. I just wanted someone to say she would turn out “okay”.
When the anxiety tears were just about to leak out, God fixed my eyes on the incredible fact that fourteen people were sitting around a big conference table talking about our baby girl.

Fourteen! People!

In China she was left in a crib made out of plywood and metal.
In Carrollton, Texas our baby girl had a team of people who are invested in her.
Not only were they invested in her, but they had a plan to help her move forward. My heart was so filled with gratitude that the tears did come. The visual of that conference room on that day…..
Fourteen people.
One baby girl.
And a chance…

Four years later… the magnitude of this is not lost on me.

In 2013 Savannah started in the Developmental Program for children with the most severe needs. Her teacher, Mrs. Lucy, was just perfect for her. She loved our baby girl deeply and also “had her number”. She saw the fight within Savannah and channeled it to help her reach milestone after milestone. Mrs. Lucy was amazing, and I felt secure sharing my “baby” with her. Then after the first full year in the Developmental Program Mrs. Lucy transferred to another job within the district and truthfully I thought I might die.

My husband I had so much anxiety over who the new teacher would be and I cried. A lot!

Then Mrs. Sarah came into the picture. She was so sweet with the biggest heart. Savannah continued to make great progress both physically and cognitively. During this time Savannah’s endearing personality began to blossom, and I give credit to Mrs. Sarah and her team for the love they lavished on her every day. They truly delighted in Savannah.


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She learned to walk during this time period. They nicknamed her Class President and Belle of the Ball. At the end of the second full year in Developmental, it was suggested that Savannah be moved up to more advanced classroom within the program. Again, I thought I might die. You are seeing the pattern here, right? Savannah would be with a new teacher… and who would that be? I began to pray for whoever the next person who be.

And whatever you ask in prayer, you will receive, if you have faith. Matthew 21:22. God had provided two perfect people for her, and so I thought this is our year. With great hesitation, we gave our blessing to move Savannah up within the program. Mrs. Erin was an amazing fit for Savannah. She loved her fiercely and was able to push her to make great strides. She had high expectations of Savannah and knew what she was capable of.

Toward the end of the year Mrs. Erin asked us if we would be okay with having Savannah tested for autism. I agreed to the testing, but I was certain Savannah was not autistic. I kept thinking her behaviors were institutional. Until I watched a video of Savannah…

I was truly blind to my child’s needs. Blinded by love. I attributed her behaviors to orphanage life and other health issues. After the testing was completed, Savannah qualified for a Communications Class where most of the children are autistic.

This fall she started at a new school within the district. This time around I was not so scared about her, or who her new teacher would be, but it was hard to leave our wonderful friends at the Developmental Center. It’s not goodbye though because our daughter Emily is now in the program. It was just hard to think of Savannah being somewhere else. We are forever grateful to everyone who worked with Savannah, and we love them like family.

I learned so many lessons through the process of Savannah’s special needs experience:

Others will likely push my child further than I will.
Other people have higher expectations of my daughter than I do.
Even though I felt so defensive at certain points of the process, I looked for the good. And I was able to find it.
God is trustworthy in everything involving the people who will be interacting with my child.
Because my child’s needs are severe, it’s helpful to have a team of people giving input.
It’s perfectly okay to be blinded by love. I’m the mommy!


Kelsey and Emily

In 2015 we brought home two girls, Emily and Kelsey.

We started the Special Education paperwork right away and went through the process with both girls again. I kept my IEP rules the same: man deodorant and cookies. After four years, one would think that the IEPs get easier. I always know what to expect as far as the process goes, but it’s still unnerving.


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Kelsey has cerebral palsy. She has difficulty walking and she is non-verbal. She was enrolled in Preschool Program Child Development where life skills and some academic concepts are taught. She had a wonderful first year. Kelsey craves structure and so going to school was a gift for her. She had a sweet teacher, and she gained confidence and purpose during her year in PPCD. She also made a best friend. I doubt in China she would have had the opportunity to go to school.

This year she moved schools to a new program called Applied Academics. You won’t be surprised to know that her new teacher Mrs. Beth is also wonderful! This time around I was able to trust the process and lean into what people were teaching me about my child. I realize the system is not perfect, but I continued to find the good in each school.

I drove Kelsey to school each day. At the beginning of the year it took her about seven minutes to walk in using the walker. By the end of the year she walked in without the walker in about two minutes flat.


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Each day the crossing guard would greet her and the aide would be waiting for her by the door. Her BFF, Kelly, was there each day. They were always excited to see each other.

It seems small but Kelsey’s daily school routine filled me with gratitude.

Gratitude for the seemingly insignificant – this plants the giant miracle. – Ann Voskamp

I think the special ed teachers that I know believe this as well. It’s what gets them up in the mornings and keeps them fighting for each child.

Before we had Emily tested, we were certain she would go to the Developmental Center with Savannah. Her needs are complex, and we started the year with a wheelchair that was completely unstable. The therapists and teachers arranged for a loaner chair that would be safe at school. This was amazing as it took us nine months to get her fitted and insurance funded for the correct chair.


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Because she was in the program where Savannah had been for over three years, we knew things would be okay. She had Mrs. Sarah, Savannah’s second teacher. Mrs. Sarah always complements Emily on any progress she makes. She always has higher expectations of Emily than I do. I think it goes back to me viewing her as a “baby” as well. She is constantly trying to find things to stimulate Emily and it always gives us ideas for home.

Most recently Emily started having difficulty eating. The speech teacher, Mrs. Amanda, and the class nurse, Mrs. Rachelle, approached me and told me they saw signs of her aspirating. If this was true, we knew she would need a g-tube.

I felt very resistant to this news, and I’m sure they felt this from me. It’s not that I didn’t believe them, I just didn’t want to believe it. After several tests, we found out that Emily is aspirating on everything she eats and drinks. Without Mrs. Amanda and Mrs. Rachelle, we would have never know this about our daughter.

Because Emily has such significant needs and she is medically fragile, it’s a gift to have other people that are invested in her care. They love her, and they view her life as valuable. They acknowledge her and treat her like a princess each and every day.

This love and this level of care? Well, it simply fills this momma’s heart with gratitude.

The education system is not perfect.
My children may not reach all the goals listed in the IEPs.
I might initially disagree with what is being thrown my way.
The bus might be late.
There will always be more paper work than I want to think about.

In the end? It is about my attitude, my willingness to listen to others, my willingness to accept hard things, my willingness to find the seed of gratitude, and let it grow into a miracle.

And finally….
To trust God with the people that He has placed into my children’s lives.

– guest post by Amy

The Gift of Waiting

September 29, 2016 by nohandsbutours 1 Comments

When I was four I asked for a calendar. Just writing that sentence seems ridiculous.

I asked my mom to keep track of my activities so I could know which event happened on what day. Sundays and Wednesdays were church and in between there was preschool, a plethora of playdates, and ballet practice. As long as I can remember I have loved to know the plan.

When we began our first adoption, a few people warned me that timelines don’t always go as scheduled. I mildly heeded their advice but inside my head I thought that our adoption would be the exception to the rule. I was hopeful that everything would go smoothly and there would be no hiccups along the way.


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Fast forward a few years later and countless delays and country program changes and switching our adoption plans from one continent to the next and things didn’t seem so easy and predictable anymore.

After a particularly rough afternoon that brought the news that our program at the time had slowed to a halt, I sent a cry of help to my closest friends. My world felt out of control. My sweet friend, Deanna, arrived 30 minutes later in my yard with a Starbucks drink and a hug.

I wanted a plan. I wanted to know when our paperwork was going to move through the system. I wanted to know what time of year we would travel and every detail about our child.

I had been holding onto my timeline with a white knuckle grip. I was obsessively checking adoption blogs and Facebook groups. I was researching other people’s adoption timeline spreadsheets. (Yes, that is a thing). I was finding any excuse to e-mail or call our social worker just to check in and ensure she didn’t have any updated news for us.

I was frustrated that God wasn’t following my schedule. It was hard for me to celebrate when I heard other people with my similar timeline had jumped ahead of me. It was a mixture of joy that another child would soon be coming home to his forever family and also sadness and frustration that our turn had not yet come.

I did not like the way I felt and it was so disappointing to see the ugliness of jealousy and bitterness in me. I knew something had to stop. I began slowly opening my hands to God’s timeline. His ways. His ideas. I realized that the ultimate goal of having my child home was important but the work God wanted to do in me during the season of waiting was vital. I knew I could either spend the next few months of waiting frazzled and anxious or I could take a deep breath and be present in the moment and learn what God had for me during this time.

I stopped checking my e-mail 57 times a day to see if there were updates from our agency. I stopped logging onto Facebook every few minutes so I could to see what other people’s adoption timelines were and who was ahead of me in the process. I slowed down my pace and soaked up my moments with our family of four before trying to rush to become a family of five.

I rested and journaled and wrote letters to our future daughter. I bought her fun fingernail polish and sparkly shoes. I reread adoption books and brushed up on our training manuals. I started looking inward to see what needed to be healed and refined instead of obsessing about what I could not control.

And you know what? Our turn finally came. It took way longer than my original plan, but one sweet day in August a beautiful little girl was placed in my arms.

My tears of joy mixed with my tears of gratefulness. I was so thankful for that season of waiting. There was so much work that needed to be done in me and when I held our daughter I knew that a lot of those delays in the process were for me. I was now a more patient mom, wife, and friend. I had been refreshed and restored and healed through that time.


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Here I am two years later beginning the adoption process again and starting another season of waiting. The second time around is sweeter. There is less stress. Less anxiety. Less worry. It’s a different pace. I do what I can on my end but I am not holding onto this process with a tight grip.

I know there will be delays and in fact, I expect them. I don’t look at spreadsheets because I have learned they are not going to help my child come home any faster. There is a peace and comfort in not relying on my own timeline and schedule. My perspective has shifted and I have learned that this season of waiting is not one to endure but a gift to receive.

………..

Courtney and her husband, Charles, live in Athens, GA where they are loving the adventure of raising their three young children. Their eyes were opened to adoption after reading the Bible, blogs, books, traveling to other parts of the world, and even seeing the beautiful picture of adoption firsthand through friends and family. They realized how many children truly need a home. Their hearts went from wondering if they should adopt to how could they not? Their youngest daughter was adopted from China in 2014 through the special needs program and they are currently in the process of bringing home another child. Courtney is a self-employed producer, editor and videographer.

Epidermolysis Bullosa: “The Worst Disease You’ve Never Heard Of”

September 28, 2016 by nohandsbutours 0 Comments

Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), abbreviated as EB, is a rare, genetic disorder that impacts connective tissue. Approximately 200 children a year in the U.S. are born with EB, and it’s known as “The Worst Disease You’ve Never Heard Of”.

Children with EB are referred to as “butterflies” due to the fragility of their skin. There are several major types, and a number of subtypes within each type. EB presents as fragile skin that can blister and tear from minor friction or trauma. Internal organs and bodily systems can also be affected. Basically, there is a defect of the gene that connects skin to your body and there is nothing for the skin to anchor to.

Currently, there is no cure and daily wound care, pain management, and protective bandages to prevent infection are the only existing options for EB treatment (debra of America). EB is considered a rare or orphan disease as it affects a small percentage of the population.

I was on a business trip that involved a time change and sound asleep when I unexpectedly received the call. As I roused myself from a jet lagged induced sleep, the agency consultant said that she had a very important question to ask (oh no, I thought, some sort of mistake in the mound of paperwork submitted?), and then continued with, “I have the file of a little girl…”

“What?” I managed to say as she repeated her question, followed by, “Yes, yes, of course, yes!” She provided additional information regarding the process and the link to a website for information on EB. I had heard of EB, but that was basically the extent of my knowledge.

The email contained two attachments: the original report in Mandarin, along with several pictures, and a separate attachment that contained the English language translation. I had planned to look at the translated information and make an informed, rational choice before viewing the pictures – but of course I immediately went to the pictures!

The photos of her wounds really frightened me; they looked very painful, and my heart broke for her.

I was really unsure. There was a brief mention of her diagnosis, EB, in the information provided and I immediately researched and continued to educate myself about EB. Once I returned home, I began to call International Adoption Clinics (IAC), pediatric dermatologists, EB Specialists and researchers, each time fully expecting a negative response. Instead each expert responded “manageable” regarding her care, and I realized that I wasn’t calling to determine whether or not to accept her referral.

Unbeknownst to me at the time, that decision had already been made. Almost immediately – in my heart – this was my daughter and I was calling on her behalf… preparing myself and advocating for her and lining up the best medical care possible for her.

In China, I was a first time parent and scared. She was so small….


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I had done extensive research, her children’s home had demonstrated a dressing change during our visit, and another EB mother had thoughtfully left detailed instructions and contact information… I was ready.

The first dressing change took forever. I was terrified that I was going to hurt her and my heart broke again the first time I saw her wounds as she bravely remained still and silent in what had to be a painful process.

Once home, in addition to the usual, expected medical appointments, we also visited a number of EB related specialists, including a pediatric dermatologist, a special needs dentist, and Cincinnati Children’s Hospital (CCH), one of several EB centers in the US.

We’re fortunate to live in an area with access to good medical care and EB professionals. Reflecting back on that time, it was a learning curve (mostly due to the fact that I was a first time parent), and could be a bit overwhelming at times.


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However, we have hit our stride. In addition to routine medical appointments, we continue regular appointments with her EB team. Dressing changes occur several times a week and are part of our routine, simply an added step following bath time and brushing teeth before bed. We order bandages online, and they arrive promptly.

EB is a serious, lifelong condition. However, apart from bandaging, extra medical appointments, and a few other concessions, she is like any other girl her age. She loves anything Disney, she loves to draw and play, and her favorite color is purple.


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The EB community is amazing. I can’t say enough great things. From debra’s nurse educator who promptly and patiently answered my endless questions and educated me about EB, to the EB team at CCH for all of their continued, valuable support.

I will forever be thankful to everyone who has supported and continues to support this journey. The EB community is very active, very organized, and advances are being made. There is information concerning care as well as practical matters such as insurance coverage. This community is always quick to respond and provide encouragement.

Despite its rarity, there are many resources available. Here are resources that I’ve found helpful:

Butterflies Beyond Borders
Cincinnati Children’s Hospital
Dystrophic Epidermolysis Bullosa Research Association of America (debra of America)
Dystrophic Epidermolysis Bullosa Research Association of America (international)
EB Lounge (closed FaceBook group)
Johns Hopkins International Adoption Clinic
McKesson Medical Supplies

I feel immense pride for my daughter, and am deeply humbled by her and others impacted by EB – butterflies are so brave. I have tremendous respect for these extraordinary children and their families.

– guest post by Kimberly; professional images by Gayle Tiller Photography

Making the Grade: Exporing Special Education Service Options

September 27, 2016 by nohandsbutours 1 Comments

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It’s September which means school is back in session. And this month at No Hands But Ours, it’s all about Education. From IEPs to OT, from homeschooling to Early Intervention, we’re covering the gamut of educational topics and how they relate to the unique needs of the children who have joined our families through adoption. …Read More

Not Really a Special Need: Adopting a Child with Albinism

September 26, 2016 by nohandsbutours 0 Comments

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No Hands But Ours is focusing on skin conditions this month. My son has albinism, but I hesitated to write our story. Heck, our dermatologist has discharged us. If my son ever has a suspicious mole or a serious burn, we’ll go back. Otherwise, I am capable of – the dermatologist pointed out – totally …Read More

Making the Grade: High Fives and Fist Bumps Instead of Hugs, Please

September 25, 2016 by nohandsbutours 0 Comments

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I still remember her. She was the best. My 1st grade self loved her big smile and her early 80s old-lady perm. Everyday, she’d stand by the classroom door at the end of the day and hug each and every one of us. I was excited to go to school everyday because of her and her …Read More

Child Who Waits: Moses

September 24, 2016 by nohandsbutours 0 Comments

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Look at tiny sweet Moses and fall in love! Born in September of 2014, Moses is just less than 18 months old. How he needs a mama to love him! Moses is described as a playful little guy who loves to interact with his caregivers. He likes to make sounds and call to different people …Read More

Making the Grade: Choosing a Classical Approach

September 23, 2016 by nohandsbutours 0 Comments

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Our decision to homeschool began like many other families’ journeys, I’m sure. We wanted to give our children a Biblical worldview, be a bigger part of their lives (no parents ever regret spending too much time with their children!), and have the freedom to choose our studies based on individual interests. We also hoped to …Read More

Find My Family: Alexa

September 22, 2016 by nohandsbutours 0 Comments

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Meet Alexa! Alex was born in October 2003 and is almost 13 years old. She loves dressing up and is an exceptional artist. Alexa has many good friends at school. Alexa’s caregivers wish is for her to find a loving family who can help her reach her full potential. Alexa herself has expressed her desire …Read More

Waiting to be Chosen: Annabelle

September 21, 2016 by nohandsbutours 3 Comments

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Oh my. Meet Miss Annabelle. This sweet baby girl is just one year old, and new to the list at HIC. Annabelle came to the orphanage when she was nine months old, and was found to have Down syndrome, and a CHD (ASD – report is in her file). You can read more about Down …Read More

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The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.