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Medical Crisis: Being Your Child’s Best Advocate

February 25, 2017 2 Comments

In the summer of 2016 we adopted our precious Sonnet. Her adoption was medically expedited due to her being profoundly malnourished. She was also diagnosed with cerebral palsy and overall global and cognitive delays. What we didn’t know about was the seizures. She was experiencing them the day we took custody of her, but the staff either didn’t realize what they were or wouldn’t acknowledge it.

We stayed in frequent contact with our international adoption clinic doctor the entire trip and had an appointment scheduled there with a neurologist shortly after arriving back in the United States. They were unable to make a definitive diagnosis, and the seizures got worse in spite of trying different common seizure medications.

By November, Sonnet was experiencing in excess of fifty seizures per day. After spending several hours in the emergency department she was transferred via ambulance to another campus of our children’s hospital where she was a patient for the next six days.



The seizures still continued every five to twenty minutes around the clock even after they’d tried two more additional medications. Then things got even worse when Sonnet presented with tachycardia (fast heart rate) and some respiratory distress. What followed was an entire day of test after test after test to determine if she had developed heart issues or an infection somewhere. (all tests eventually came back normal.)



Two days of no food and drug induced sleepiness to the extreme, left us really concerned. Sonnet was put on “special watch” with constant video monitoring, and they started to talk about ICU in our conversations. The dietician wanted to start a feeding tube. At this point the mama bear in me came out.

Sonnet had done nothing but decline since being in their care, and they seemed unable to hear me when I argued that the medicines were just making her worse. The feeding tube would be a step back for this previously starving child who actually loves to eat. Of course she wasn’t eating when she was so drugged up!



The next time the team rounded to our room I was ready.

(I’d brought the photo below up on my computer.)

I told them, “I didn’t go halfway around the world to bring Sonnet home just to die in an American hospital. She deserves better and we can do better. The bubbly child in this photo is who we are fighting for. This is who you need to get back.”



I don’t know if I heard audible gulps, or if it was just in my imagination, but things changed that day.

After refusing to let them give either of the two newest seizure medications again (these were the fourth and fifth different ones she had been given that did nothing for the seizures but gave more side effects) and begging them to find something better for her, they tried something different. They tried a medicine that isn’t largely prescribed for children… but it worked for Sonnet!



Then the rascal made the decision for the doctors the next morning and pulled out her own IV. The nurse wanted to replace it but agreed to wait for an hour until the doctors made their rounds. The dietician wanted it put back, but the doctors thought we ought to give her a chance to eat and drink on her own.

She was a champ. They issued the challenge and she conquered it!

On Wednesday the calorie count was only at 86. The dietician said she would have to eat an impossible (I thought) amount by lunchtime on Thursday to avoid the tube. But she did it! Her calorie count by then was nearly 1200! By this point Sonnet was back to herself. She was smiling and waving, and blowing kisses. Nurses actually began coming in our room just to see the transformation themselves!

As we were going through the discharge process, I thanked the doctors for working so hard to help Sonnet, and for putting up with me cause I knew it wasn’t easy at times. One of them replied that I was a “great advocate for Sonnet”. I told her that was a very polite way of putting it. She assured me that she was serious and not being facetious.

And that is what it comes down to as parents, isn’t it?

We simply do what needs to be done for our kids.

People tell me I’m so brave, but I’ll be honest. I’m not. I am somewhat of a coward really, and as human as anyone else. I don’t enjoy a medical crisis, and do enjoy my own bed. But the bottom line is that I love Sonnet fiercely and just do what has to be done to see that her life is as good as we can make it.

Sometimes with a medically needy child that means taking on the medical establishment to help them see that she isn’t “typical” and needs them to look outside the usual medicines. The typical ones didn’t work for her and she didn’t tolerate them either. True, the doctors have the education and at some point we do have to trust them and just go with it.

But no one knows your child as well as you do.

Yes, read any literature your physician makes available to you.
Yes, visit reputable websites and learn some more.
Yes, educate yourself on your child’s special needs.
Yes, educate yourself on all of their medications and the expected side effects.

But remember that no one loves your child as much as you do. Make the doctors see that this is a valuable life and you’re counting on them to come through.

It has now been three months since Sonnet has had a seizure. She has gained about fifteen pounds and is learning new skills quickly. See how much she has changed!



As I reflect back and see us as a family truly in crisis, I see where entire days just seemed to vanish as the doctors attempted to bring Sonnet back from (and I quote one of the neurologists) her “scary place”. I am tremendously grateful to family members, friends, and the medical staff who worked hard and tirelessly to bring our girl back to us.

What can others do to help in a time like this?

Many kindhearted people contacted me to ask, “Can I do anything for you?” and I appreciated that so much. But the funny thing is, when someone is truly in a crisis you can’t even think of what you need. Thankfully people jumped in and helped as their instincts told them. People helped in so many creative ways. It just what we needed!

I was a hot mess and am speaking truth when I tell you I simply wasn’t able to worry about my kids at home. My hours were consumed with getting Sonnet the help she needed, assisting or comforting during test after test after test, researching possible solutions on my own, and mundane things like figuring out what to eat to stay alive. Nope, not being dramatic.

So what were some of these things that were so helpful to us?

Two of my adult daughters and a neighbor jumped in. I didn’t need to be concerned about the five kids still at home. They were receiving loving care, and while not happy that I was gone, they weren’t the bundle of nerves I expected I might come home to. Some of them have considerable anxiety issues and this could have been so bad!

Friends jumped in to help those who were caring for the kids at home. Meals were delivered every night and continued through our first couple of days at home. I know it was such a relief to those caring for the other children to not have to worry about what to feed the mob at night.

A few days into our stay, Sonnet was in desperate need of a good bath. She had gone through two sessions of having leads glued into her hair and was just a stinky baby! I was shocked to find that the children’s hospital had nothing to offer for bathing someone with her needs. Our request for a bath chair resulted in a regular plastic chair with no supports or restraints.

Um… guys she usually can’t really sit up anyway, and is having seizures frequently!

I put out a call on Facebook for anyone local who could go to our house to pick up our Rifton Blue Wave chair so I could bathe her safely. Just moments later as I was making arrangements with a friend for the pick up, the adult daughter in charge at my house sent me a text that the chair had already been picked up by someone else. That fast. Two different people were ready to drop everything and make an hour round trip to drop the chair off for her! We used that chair a couple of times over the next few days and it made our stay so much more pleasant. What a huge blessing to have it brought to us, and so quickly.

While we weren’t allowed to have people up to our floor at the hospital, friends found creative ways to help. One out-of-state friend ordered a soft little doggy toy and balloons for Sonnet, and snacks for me from the gift shop and had them sent up. Once Sonnet was feeling better she spent hours playing with those balloons and is still snuggling with the stuffed dog at home.

Other friends sent up snacks, (who knew just figuring out what to eat was so hard?) and things like lip balm and lotions to make my creature comforts better. There was even ginger ball candy that was perfect for soothing my upset, nervous mama tummy. A couple of times when I was finding myself especially longing for a cup of good, strong coffee…one would -poof- appear via the concierge, having been dropped off by angels in the form of especially thoughtful friends.

Others sent notes of encouragement, posted their concern on my Facebook page, or sent text messages. It was so helpful to know that others genuinely care for Sonnet, and we weren’t in this alone.

And then there was the whole village of people who were praying for Sonnet.

From Facebook friends to other adoptive parents in the China groups, to in-real-life friends and their churches, to our pastors and the list goes on.

This was perhaps the biggest blessing to know people were praying.

I sincerely believe we witnessed a miracle that week. We had a desperately sick little girl on that Wednesday, and on Thursday she was on her way back to us.

What can you do yourself to prepare for a hospital stay?

I wasn’t sure that Sonnet would be admitted the day I took her to the emergency department, but suspected it could happen. What things did I deem necessary to take just in case?

I quickly packed a backpack with a couple of clothing changes for the both of us, some snacks, a one cup coffee maker (and noodle cups to go along with it too), and my computer and tablet with their chargers.

I left the backpack in the van, but it was there and ready to quickly go into the back of the ambulance with us when we were transferred.

Helpful hint: If you have a medically needy child, keep a stash of portable foods that can be packed quickly.

You likely won’t have the time or brain cells to think through what to grab. The clothes and snacks are obvious. I do most of my reading on a Kindle app on my tablet so it had to go. The computer was my primary way of communicating needs to friends. It was also super handy to provide children’s music (Sonnet has never been a fan of television but loves music) and some white noise for me when attempting to sleep at night.

The computer was invaluable for researching treatments, medications, and tests that were being run. But the biggest surprise use was having a nice, large photo of Sonnet handy to show them WHO they were really working for. She didn’t resemble herself at all during most of that week, and I truly think the turning point was when they glimpsed the real Sonnet.

All my words – describing how full of life she was before this happened – didn’t affect things as much as that one picture.

– guest post by Randi, mama to thirteen children, ages seven through thirty-five, and grandma to twelve, ages newborn through thirteen

Waiting Child Highlight: Evan

February 24, 2017 0 Comments

This cutie is Evan.

Evan was estimated to be 4 years old when he was abandoned. He is now believed to be six, soon to turn seven. His abandonment was likely due to the high cost of blood transfusions, which he needs to treat his medical condition of Thalassemia. We are guessing that his family did this because they hoped that he would be adopted by a loving family that could provide him with the medical care he needs.



Evan is super smart and well behaved. He attends class in the orphanage with other children his age and gets along with them well. His teachers say that he follows directions and does well in class. He is also a tidy little boy, who likes to keep his things neat and organized. Some of his favorite things to do are playing outside, putting together puzzles, drawing and dancing.



Evan has a lot of potential and would likely thrive in a loving family. Watch his videos here: One and Two.

If you would like to review Evan’s file, please visit AAC website to learn about the program. If you have any questions or want to review Evan’s file please contact the China program director by email or by phone at 970-775-4683.

Homeschooling Your Adopted Child: 8 Steps to Get Started

February 22, 2017 0 Comments

“There is no school equal to a decent home
and no teacher equal to a virtuous parent.”

~ Gandhi

home·school·ing
ˈhōmˌsko͞oling/ (noun):
the education of children at home by their parents.

The definition of homeschooling is fairly straightforward, but families who choose homeschooling as the best option for their adopted or special needs children can face some unique obstacles and challenges.

I believe homeschooling is a wonderful option for many children so, as a former elementary teacher and homeschool mama of nine years, I am sharing some helpful tips, answering a handful of FAQs, and listing some great homeschool resources and links.

I pray this post will be helpful to all of the homeschool moms out there and also to those considering homeschooling.



Homeschool Tips and Getting Started

1. Weigh the pros and cons.

The Pros and Cons of Homeschooling
Homeschooling a Child with Special Needs – Advantages
Homeschooling a Child with Special Needs – Disadvantages
10 Reasons You Could Never Homeschool (And Why You Really Can!)
5 Pros and Cons for Homeschooling Older Adopted Children
Homeschooling an Adopted Child: The Whys and Hows
Should You Homeschool Your Special Needs Child?


2. Become familiar with state homeschool laws and requirements and special education provisions.

Know the Homeschool Laws in Your State
Know the Special Education Provisions in Your State
Testing Information
Two Steps for Protecting Your Special Needs Homeschool


3. Determine your homeschool vision and goals.

Planning Your Homeschool Year: Setting a Vision
Homeschool Planning
Goal Setting for Your Homeschool Year
10 Steps for Planning Your Homeschool Year
Setting Homeschool Goals and Knowing Your Purpose


4. Find your child’s learning style.

The Learning Style Quiz
What’s Your Learning Style?
How Do I Learn Best?
What is My Child’s Learning Style?
Left Brain Child Quiz
Is Your Child Right-Brain Oriented?
Chapter 4 of 102 Top Picks for Homeschool Curriculum (book)
The Way They Learn (book)
The Big What Now Book of Learning Styles (book)


5. Determine your teaching style, educational philosophy, and your child’s learning style.

What’s your homeschool personality?
What is Your Teaching Style?
Chapters 2, 3, & 5 of 102 Top Picks for Homeschool Curriculum (book)
The Different Ways to Homeschool
Five Homeschooling Styles
Guide to Homeschooling Approaches
Homeschool Philosophies: A Resource List
What Kind of Homeschooler Are You?
The Homeschool Style Quiz
Teaching Method Assessment


6. Seek out and join local and online homeschool support groups.

State and Local Groups:

HSLDA Group Listings
Homeschool.com Group Listings
Homeschool World Group Listings

Yahoo and Facebook Groups:

Adopt and Homeschool Yahoo group
Homeschoolers with Special Needs Yahoo group
Homeschooling Special Needs Kidz Yahoo group
Special Needs Homeschool Facebook group
Special Needs Homeschooling Facebook group
Homeschooling Adopted Children Facebook group
Adoptive Homeschooling Families Facebook group
Homeschooling Your Children Adopted from China Facebook group
Homeschooling with Connection Facebook group


7. Choose curriculum and begin planning/scheduling.

(This may be the most overwhelming step of all so let me just say upfront – it will be OK!) If your child has previously attended public or private school this is also a good time to read and learn about deschooling.

You might also consider doing a homeschool trial run using a free homeschool curriculum such as Easy Peasy, Ambleside, An Old Fashioned Education, Khan Academy, HippoCampus, CK-12, SAS Curriculum Pathways, or Free World U.

102 Top Picks for Homeschool Curriculum (book)
Cathy Duffy Homeschool Curriculum Reviews (website companion to book)
7 Scheduling Tips for a Working Homeschool Mom
The Ultimate Guide to Homeschooling for Working Moms
Top 10 Ways to Schedule Your Homeschool Calendar
10 Ways to Create & Maintain Balance
Tweaking Homeschool Curriculum to Fit Your Special Needs Child
What is Deschooling?
How to Transition from Public School to Homeschool
The Truth About Deschooling
Tips for Deschooling
Deschooling: The Rules You Need to Break (parts 1 & 2)


8. The final and most important step – don’t overthink.

One of the biggest advantages of homeschooling is that nothing is set in stone!

10 Things You Need to Know if You’re Homeschooling for the First Time This Year


FAQs

Q: Can I homeschool my adopted and/or special needs child?

Yes! Homeschooling is legal in all 50 states and parents may homeschool both adopted and special needs children (does not include foster children). Homeschool laws and requirements vary by state so be sure to check the specifications for your state including the special education provisions for your state.


Q: Can my homeschool student qualify for and receive special needs services/therapies (OT, PT, speech) through the public school district?

The short answer is it depends on the state and sometimes even on the district, so you will want to check your state laws as well as district policies.

“IDEA requires public schools to identify, locate, and evaluate children with special needs, whether or not they attend public school. This means that public schools are universally required to offer free evaluations to homeschooled students suspected of having special needs. Additionally, should a student be determined to have special needs that hinder the student’s performance, the public school must convene an IEP team, made up of the student’s parents or guardians and assorted teachers and professionals, to develop an Individualized Education Program (IEP). While homeschooled children with special needs have a right to both evaluation and an IEP, these services are not mandatory and parental consent is required. While an IEP developed at a public school can be of use to a homeschooled student—note that the IEP team cannot order a homeschooled child into public school and must take into account the parent’s decision to homeschool the child when developing the IEP—its usefulness depends largely upon what services the student needs and what services, if any, the school makes available to homeschooled students. ~ CRHE

“About 90% of funding for public school special education programs comes from the state — not the federal government. Although the federal government will not allow its Individuals with Disabilities Education Act (IDEA) money to go to homeschoolers in ‘homeschool law states,’ the states can distribute their 90% in any way they choose. Some states have enacted laws that provide services to ‘homeschool’ students; these provisions are included in the state summaries on our website. If a state is a ‘private school law state,’ homeschoolers are eligible for services funded by both the federal IDEA program and the state.” ~ HSLDA


Q: Can my homeschooled student participate in public school sports and/or extracurricular activities?

The short answer to this question is also it depends on the state and sometimes even on the district, so again you will want to check your state laws as well as district policies.

From HSLDA: “Homeschool athletes can participate in homeschool and recreational leagues around the country, as well as some private school leagues. One of the biggest debates in the past several years, however, has been whether or not to allow homeschoolers equal access to public school sports leagues. Homeschooler participation in public school activities is usually subject to certain requirements, which are often part of the school’s policy and the state high school athletic association’s bylaws. Although specific requirements vary from state to state, they generally include: 1) being in compliance with the state homeschool law, 2) meeting the same eligibility requirements (residence, age, etc.) as public school students, and 3) submitting verification that the student is passing his or her core subjects. Consequently, the homeschooler may have to provide additional information, such as achievement test scores or periodic academic reports, even if the state’s homeschool statute does not otherwise require them. In states that do not have a specific statute or regulation mandating equal access, individual schools and school districts have the authority to determine whether homeschoolers can participate in public school activities. Policies often vary from district to district. In some cases, districts that would like to allow access are restricted from doing so by the high school athletic association’s bylaws.”

State Laws Concerning Participation of Homeschool Students in Public School Activities (HSLDA)
Homeschool Sports Access by State (CRHE)


Additional Resources

Links and Posts

Homeschooling a Struggling Learner (HSLDA)
NATHHAN National Challenged Homeschoolers Associated Network
Homeschooling Your Internationally Adopted Child (HSLDA)
10 Ideas for Homeschooling Your Adopted Child (NHBO)
Why We Homeschool (NHBO)
Design Your Homeschool
Learn to Read – Special Needs
Do2Learn

Books and Supplies

Home Schooling Children with Special Needs (book)
Special Education at Home (book)
Homeschooling Your Struggling Learner(book)
1000 Recommended Apps for Children with Special Needs
School Speciality – Abilitations
Discount School Supply
eNasco
Learning Resources
Kaplan

Happy homeschooling!

jenniferbNHBOsig


Reluctant Spouses: His Perfect Timing

February 21, 2017 2 Comments

I was ready to adopt long before my husband was. More than ten years longer. It all started when I watched a documentary about the orphans and orphanages in China. My heart broke and I immediately felt compelled to adopt a little girl from China. My husband did not feel the same. I honestly could …Read More

Meant for This: Parenting Children with Complex Heart Defects

February 20, 2017 0 Comments

I want to start by saying that our miracle children astound me. We love them personally and uniquely. Their birthparents are revered in our home; we thank God they had the courage, strength, and compassion to have them and keep them safe. I married my college sweetheart. Kyle is way more incredible than me; I …Read More

Choosing Happiness Daily: Adopting a Child with an Unfixable Heart

February 19, 2017 1 Comments

One evening less than two months after bringing home our second son from China, I told my husband that I wished we could adopt an older child someday too. In both of our travel groups, there were older children who were adopted. These had made such an impact on my heart! They understood the idea …Read More

Waiting to be Chosen: Teddy

February 18, 2017 0 Comments

Teddy is a sweet and playful 4 year-old who is thriving in his foster family! He was abandoned in 2015 at a railroad station, yet was not speaking much at the time. Due to his lack of words, he was diagnosed with Autism upon intake. His agency visited with him this past October, and they …Read More

Yes, I Did. I Asked For This.

February 17, 2017 14 Comments

Someone finally said out loud what I assumed people might be thinking all along. I was asked, “How are you?” Careful not to ever come across as complaining about this beautiful mess God has called me to, I simply answered, “Good.” I never want to appear to have it all together (which isn’t hard); however, …Read More

Waiting to be Chosen: Maverick

February 16, 2017 1 Comments

Maverick is 2 years old and the only special need listed in his file is that he is HIV+. Maverick is adorable! He is said to be positive, active and has a ready smile! It seems like he is bonded to his caregivers and looks for their approval. He learned to walk at 16 months. …Read More

Red Flags: Not All Agencies Are Created Equal

February 15, 2017 0 Comments

You may have seen that an adoption agency with a program in China was recently “temporarily debarred” by the State Department. Some of the violations by this agency included (I am paraphrasing): Charging families in-country fees that were different than what they had previously quoted. Charging fees that were unreasonably high in consideration of services …Read More

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