A Beginner’s Guide to Special Needs Adoption: Post Two

June 1, 2016 A Beginner's Guide to Special Needs Adoption, Faith, I'm Ready to Adopt, medical needs checklist, pre-adoption, referral, should we adopt?, waiting for referral 3 Comments

Becoming a parent, no matter how it happens, is never easy. But for those just looking into the possibility of adoption it can seem positively overwhelming. It is our hope to change all that. This 8-post series will go step-by-step through the process to adopt through the special needs program for those of you who are just starting out on the adventure of a lifetime. Join us.


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Here are the topics that will be covered:

1. Why China?
2. Special Needs and the Medical Conditions Checklist
3. LID vs. Special Focus
4. Picking an Agency – Part 1
5. Picking an Agency – Part 2
6. The Steps of the China Adoption Process (Acronyms Decoded)
7. Beginning the Paper Chase and Homestudy
8. Things to Read, Do and Study While You Wait

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Special Needs and the Medical Conditions Checklist

The China international adoption program is almost exclusively a special needs program. Gone are the days when healthy baby girls were adopted from China with short wait times. The non-special needs (NSN) program still exists, at least in theory, but with a wait time upwards of eight years, most families quickly sign up for the special needs program’s short wait times and predictability.

If you’ve decided that China is the program for your family, you are likely already considering a list of special needs to which your family might be open, and looking at a piece of paper called a medical conditions checklist (also known as an MCC). When we started our adoption process, I found this research to be quite daunting because I don’t have a medical background, and had never heard of many of the needs on the list. The great news is that I eventually figured it all out, and you will too!

There is something to be said for beginning this research even before you pick your agency. Your overall wait time will vary with each agency depending on several considerations including age, gender, and which needs you’ve checked on the MCC. You will be better equipped to ask questions of prospective agencies if you already know what your MCC will look like before you start contacting them to talk about wait times.

The best way to begin this part of the process is to read. Read everything that you can get your hands on in order to familiarize yourself with the medical terminology. I suggest reading about every need on the list—even those needs that you initially believe to be too involved for your family may not be quite so scary once you are armed with knowledge. Read definitions, of course, but just as importantly, read the stories of children who have joined families, and who are thriving with great medical care.

A good jumping off point for research would be the following posts found here at No Hands But Ours:

Blood Conditions: Hemophilia, Thrombocytopenia, Thalassemia, Phenylketonuria.
Central Nervous System: Cerebral Palsy, Epilepsy, Hydrocephalus, Microcephaly, Moyamoya, Spina Bifida.
Craniofacial: Bilateral cleft lip and palate, facial deformity, Hemifacial Microsomia, Microtia/ Atresia, Tessier Cleft, Unilateral Cleft Lip and Palate.
Developmental: 22q Deletion Syndrome, ADHD, developmental delays (global and speech), Down Syndrome, malnutrition, poor brain development, Sensory Processing Disorder (SPD).
Heart: Congenital Heart Defects
Infectious Diseases: Hepatitis B, HIV, Syphilis, Tuberculosis
Orthopedic: Amniotic Band Syndrome, Arthrogryposis, Clubfoot, Dwarfism, Limb Differences, Osteogenesis Imperfecta, Radial Dysplasia, Scoliosis, Torticollis.
Sensory: hearing loss, vision issues.
Skin Conditions: Albinism, Congenital Nevus, Epidermolysis Bullosa, Ichthyosis.
Urogenital: Anorectal Malformation, Cloaca, Cryptorchidism, Hirschprung’s Disease, Hypospadias, Incontinence, Recto-Vaginal Fistula, Underdeveloped/ Ambiguous Genitalia, VACTERL association.
Vascular: Port Wine Stain, Congenital Hemangioma, Infantile Hemangioma, Klippel-Trenaunay, Parkes Weber, Sturge-Weber.

Also, check out the Facebook group: Special Needs Resources — China Adoption for more information on each special need, and to connect with mamas who have adopted children with each of the special needs on the list.


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Consider the following:

The biggest special need in China adoption is to be born a boy! Have you heard this yet? More than 70% of adoptive families prefer a girl. The longer you hang around adoption groups, the more you will see that boys (often even very young boys with minor and correctable special needs) wait, wait, and wait for loving families. If your family is open to adopting a boy, you will likely be matched very quickly. Check out this blog post from Love Without Boundaries about adopting boys and watch this video.

Your severe special need may not be my severe special need. It is an extremely personal process to determine the special needs to which your family is open. I often read posts in the Facebook groups requesting lists of minor and/or correctable special needs. It is completely understandable that you would want to gather that kind of information, but unfortunately the answer is not so simple. I will use my own family as an example. We adopted a little boy with Hemophilia, and we think that Hemophilia is very manageable despite the fact that our son receives bi-weekly IV infusions. Hemophilia is always listed as a special focus need, and few families are open to it. Our family did not check cleft lip and palate on our MCC because of the unknown possibilities including: number of surgeries, follow up care, corresponding therapies, and orthodontia. Cleft lip and palate is most often found in LID files, and is considered by many adoptive families to be extremely manageable.

So you see it is totally a matter of perspective. You cannot shortcut this part of the process. Do your own research. Read about what life is like with each of these needs — both in the best and hardest case scenarios. Some things to consider:

(1) Travel requirements: Some needs require travel for specialized care. This could mean anything from traveling once a year for a check-up visit, to having multiple month hospital stays in a strange city depending on your child’s need. Consider travel costs, where you will stay, and how you will manage care for your other children.

(2) Insurance: Have you evaluated the strength of your insurance policy—not all insurance policies are created equal!! What is your deductible? What does your network of providers look like? And can you ensure that all of your child’s needs will be covered? What if they aren’t? Do you have an idea of the out of pocket costs you will be facing? Will you have to go out of network for any of the specialists you’re your child might see? It is difficult to get preauthorization from insurance companies until the child is in your arms, but you should be able to get a general idea of what will be covered by looking at the policy, and by calling to talk to a representative, you may be able to figure out what drugs are covered under your plan. Again, talk to BTDT mamas about what medical costs have been like for their families.

(3) Medical Care: How many (if any) surgeries will your new child require, and are there any corresponding therapies? Will your child require weekly, or bi-weekly, or monthly visits to the doctor? How about occupational therapy, speech therapy, or physical therapy? All of the above? Most states have Early Intervention programs that provide services for children from ages 0-3 in the areas of speech, physical, and occupational therapy. Not all of these services are free. For instance, my son receives speech therapy through Early Intervention, and we are charged a specialty co-pay for each of these sessions. But cost is just one factor to consider. Also consider time requirements, especially if both parents are employed or have several other children to care for. And maybe most importantly, consider your level of comfort with your child’s medical care. When we adopted our son, I was told that one of the things I should weigh most heavily was my own comfort level with needles, because not only would he be receiving bi-weekly IV infusions, but someday I would be giving them to him myself. Similarly, consider whether your child will have specialized medical needs, and assess your own level of comfort with those needs.

(4) Education: Will you be able to meet your child’s educational needs? ASL, Braille, SPED, 504s, IEPs, etc. Particularly, for children with medical needs affecting their hearing and vision, what programs does your school system have in place to meet those needs? Most all of our children will have some kind of delay; this is just often a fact of life when you spend your formative months and years in an orphanage. So, consider that in addition to your child’s listed special need, you may be helping them to catch up in areas of motor development, and you will certainly be helping them to learn English.

(5) Work Commitments: Do you work? Does your husband? Will you be able to take time off with your new child? I’m not knocking working—I am a full-time working mama— but there are some needs that my family is not able to handle because we are obligated to our jobs in ways that do not allow for lengthy travel or frequent medical visits. That said, my son receives his IV infusions twice a week at our local children’s hospital, and we’ve made it work. Again, this is all so individualized based on your job, the amount of leave you have accrued, and in many cases, the flexibility of your boss.

(6) Child care: What is your child care situation going to be like? This may be as simple as mama staying home with the new little one, but consider the demands that your other children will place on you. If your kiddo will go to preschool, can the school manage her needs?

Again, think about both the best and worst case scenarios for each special need. Medical information from China is often sparse. Although adoption files prepared by the CCCWA are generally known to be accurate, they are sometimes incomplete. Occasionally, diagnoses are incorrect or missed entirely. It is important to have an honest conversation about how you would feel if, for instance, your child’s heart condition was more serious than listed, your child required more surgeries than you originally anticipated, or your child’s correctable special need turned out not to be completely correctable.

Consider also that your child’s listed special need may not be your biggest concern once you are parenting him. Your child will necessarily have experienced trauma. He will have been abandoned by birth parents, living in an orphanage, and likely been subject to quite a bit of medical care while in China. These events have lasting effects on our children. Being adopted and moving to the United States, while beautiful and amazing, is another trauma for your new child. Some children make this transition seamlessly, but for others, it is extremely difficult.

There’s no way to know how your child will react to this huge life change before you meet him, and it is important to prepare yourself for every possibility. Read The Connected Child. Understand that many of our children have sensory issues stemming from lack of stimulation in the orphanage. Read about sensory processing disorder, and sensory issues in general. Allow for the possibility that it may take time and very patient work to help your new child sort through his emotions surrounding his early experiences and adoption.

Many been there done that (BTDT) families will happily talk to you about their experiences so that you will be able to keep your expectations realistic as you go through the matching process, and as you meet your new child.

I’ve thrown a lot of information at you. This is a labor intensive process, and one that requires research, reading, and soul searching. Having said all of these things, there is one caveat that I will throw in here because it was so very true for my family: you may just find that regardless of the boxes you checked on the MCC, your child is your child. I was a first time mama when we started our adoption, and we were initially unsure about almost every special need on the list. One day, I saw my son’s picture on a waiting child website. I immediately knew that this was my son. I felt so strongly that he was ours that his special need became almost irrelevant. Luckily, my husband felt the same way.

I can’t tell you how many times I’ve seen families step out in faith when they see a child that they feel drawn to in this way. The MCC is thrown out the window, and the family just knows that they will do everything under the sun for that baby. Allow for this possibility — educate yourself, be aware of what your family can handle, but know that end of the day, it may come down to the knowledge that a child is meant to be a part of your family.

……..

In summary regarding the MCC:

– Do your research on special needs.

– Consider each special need in light of your family’s circumstances — time, emotional, physical, financial.

– Do your research on institutionalization: common developmental delays and trauma.

– Find BTDT adoptive mamas to help you sort through the MCC, and consider joining FB groups to aid in your research.

We will talk more about children’s’ files in the next post—LID vs Special Focus. What is the difference between the two, where to find various advocacy pages for Special Focus children, and what to do if you find a special focus child that is not with your agency. I will follow that with a post on choosing an agency.

Please feel free to contact me with any questions, or leave a comment below with questions and/or additional advice!
FaithNHBOSig



3 responses to “A Beginner’s Guide to Special Needs Adoption: Post Two”

  1. Nathan says:

    Hi Faith! Thanks for your post. Do you know where I can find information on the required size of houses for families to consider adopting? Also, do you know of families who use healthcare sharing services like Samaritan Ministries International? Are those questions to just ask an agency and I may get different answers or is there a straightforward answer? Thank you Faith for your raising awareness on these special kiddos!

    • Katie says:

      Housing requirements vary by state. Some states require a certain number of bedrooms per children and some states have no set requirements for house size/number of bedrooms. The healthcare question is probably best directed at the service. Do they cover adopted children? What healthcare needs do they cover? An agency probably won’t know that.

  2. Melissa says:

    HI Nathan,

    I don’t know if you have found the information yet about insurance. We also have Samaritan Share and a friend of mine that is going to China this week does as well. She had to go to their previous insurance carrier and provide a letter stating they would cover the adopted child and that they could not be turned down for medical care. The adopted child is considered and treated just like a birth from the family. This was very good news for me. I don’t have many details, but possibly that will ease your mind and help direct you. If you have received even more info feel free to reply with that as well, I’d love to know. God bless!

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