Considering Developmental Delays as a Special Need

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“Developmental delays” is a special need commonly found in files from China. This is not a special need which has a specific diagnosis like HIV+ or albinism. Parents often have a lot of questions about what this label means. Is it a minor or more involved special need? Are these delays the sort of thing that can be overcome with the loving attention of a family and specialized therapies?

First, it’s important to note that in the early decades of international adoption, adoptive parents were often surprised to find that the babies they adopted were not meeting the normal developmental milestones. There was not a good understanding that children raised in institutions, who lack as much attention, nutrition, and stimulation as biological children, will not develop at the same rate. It was not until the late 1980’s that researchers began looking at the development of children raised in institutions. Most families beginning the process now will be probably be educated enough to know that they should expect a child raised in an institution to lose one month of development for every three months in an institution, as a very general guideline. This might look like rolling over at 6 months, sitting unassisted at 9 months, crawling at a year, and walking sometime between 18-24 months.

It is because of this that some parents have the mistaken idea that developmental delays in a file is an easy need because these are simply “orphanage delays” that the child will overcome during the first months or years home. Developmental delay in a file means the child is more delayed in development than their (already delayed) orphanage peers. I cannot stress enough that this is not a standard label slapped on to every child’s file.

Parents who are expecting minor delays which will be quickly overcome are often caught off guard when presented with a child who has delays which are much greater than anticipated. Jen writes “I had heard stories of institutionalized kids coming home to their forever family and overcoming so many of their delays. I was optimistic and ready to welcome my son into my heart and our family forever . . . Those first two weeks with him in China were confusing, stressful and scary.  Honestly, I thought my life was over. I cried every night to sleep. I even had thoughts of not bringing him home.”

Much of the information parents will encounter in process like shared family stories, or even information from agencies such as this recent blog post on an agency blog, gives the impression that this is the case for most children, maybe throwing in a short line at the end about how sometimes the delays are permanent. It is important for families to consider the full range of possibilities when deciding whether or not to adopt a child with developmental delays. 

What does it mean when China uses the “developmental delays” label? There are several possibilities.

  • The child could have the developmental delay label because they have a medical diagnosis which causes those delays. Children with serious heart conditions or children with unrepaired cleft palate who are not receiving adequate nutrition are two examples of special needs where developmental delays can be an additional label in the file.
  • The child could have an undiagnosed need which causes the delays. Cerebral palsy is one condition which is sometimes diagnosed once home in children with the developmental delay label. Genetic syndromes are not commonly diagnosed in files from China, but with chromosomal testing becoming more standard, it is not unusual for children with general developmental delays to be diagnosed with a specific chromosomal deletion or duplication once home.
  • Some children really do need more individual love and care than they get in an institution to develop, even in the “best” orphanages. They have the equivalent to ‘failure to thrive.’ These children do often overcome their delays once they are placed in a family and after receiving targeted therapies.
  • Finally, some children may have lifelong developmental delays but never receive a specific diagnosis once home, even after chromosomal testing.

488047_10151353375486943_180755832_nDevelopmental delays is such a catch-all label that you cannot generalize about an outcome. Without knowing the reason a child is nonverbal, you can’t speculate whether he or she will learn to talk after speech therapy. Even children with the same diagnosis can have different outcomes. For example, about 25% of people with cerebral palsy are nonverbal. If you are open to developmental delays as a special need, you need be open to the entire range of outcomes, including the possibility that your child will need lifelong care. It is essential to have a flexible attitude and the ability to cheer on your child’s successes without comparing him or her to their peers of the same age.

Shecki from Greatly Blessed shared how her idea of what developmental delays meant versus the reality with her son:

“When considering any special need, you should think of the worst case scenario, and determine whether your family could handle that or not.

When I considered “delays,” tacked on to the end of Luke’s primary special need (which, ironically, aside from one specialist appointment has been a non issue), I thought “worst case scenario” would be that he’d still be a little behind when he was school age, and would need an IEP to help him get through school with his peers.  Never in my wildest imaginings did I think that “delays” meant he would not walk, speak, or toilet train, and that he would not be in a regular classroom at all.

The long and the short of it is, we took a risk, never really believing, or even suspecting, things would turn out as they have.”

If you are considering developmental delays as a special need, you should ask yourself some of the same general questions you would ask about any need:

  • Can we meet the medical needs of this child?
  • What are the resources in our area for physical, occupational, speech, and/or feeding therapy?
  • What is our insurance coverage for those therapies?
  • How much time do we available for medical appointments, therapies, and working with our child at home?

On an almost daily basis, someone will ask in a forum “We are reviewing the file of a 3/4/5 year old who isn’t walking/talking. Has anyone adopted a child with similar delays who overcame them?” I have to tell you that you are asking the wrong question. It does not matter how many other children overcame their delays. It only matters if this specific child will and no one in the world can tell you that. The question you to ask yourself is if you would love and cherish this child as a part of your family as they are right now, as presented in the file, or if you really only comfortable with the potentially improved child.

 

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Five Reasons to (Still) Adopt from China

Last November for National Adoption Month, I gave five reasons to choose China to adopt from. Since then, two of those reasons are no longer part of the China program. I thought I should update it this year to let you know that despite recent program changes, the China program is *still* a great option.
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November is National Adoption Month! I thought I would kick off the celebration by giving some reasons why China’s adoption program might be a good fit for your family.

1. The process is streamlined and predictable. Unlike adopting from foster care, domestic infant adoption, or programs from some (but not all) other countries, the China program has a clearly defined timeline of steps. Most families will bring home a child 10-15 months after they begin the process. Many people switch to the China program after a failed attempt at adopting through another program, so the stability is appealing.

2. You have the ability to choose your child’s age, gender, and the special needs you are comfortable with. You will not be assigned a child, nor will you be penalized for declining a file which you do not feel is a good fit for your family.

3.Travel is a single two week trip and only one parent is required to travel. Some countries require multiple trips or a lengthy stay in country to complete the adoption. While this gradual approach is undoubtedly better for the child or children being adopted, the fact is that many families could not adopt if that were a requirement. China’s travel requirement is one which most families can meet.

4. The China program still has generous eligibility guidelines. While the guidelines are now more restrictive than previously, the upper age limit is 5-10 years higher than many programs. Allowing five children in the home is more than other programs such as Thailand, South Korea, or India. China’s criteria for single parents or couples with a single divorce in their marital history are more generous than the former guidelines.

5. The China program is well established and stable. Some people have been concerned that the recent changes might indicate an upcoming closure of the program. On the contrary, China has regularly made updates to their program every 3-5 years. This is one of the aspects of the program which has helped it to continue going strong for more than 20 years. Nearly 80,000 children have been adopted to the US from China, far more than any other placing country. Of the other four top placing countries, only the Korean program remains open to American parents now that Russia, Guatemala, and Ethiopia have closed.

If you are just beginning your adoption journey and found this post helpful, you might consider buying my book which has all of this information and more, including several chapters on travel.

Updated: Evaluating agency fee schedules

I posted a version of this blog post earlier in the year. Since that time I have continued to research agency fee schedules. Since this is a very important topic, I have revised the post to include more agency information.

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Although I have already written about evaluating the amount of fees a potential agency charges, I have recently run into a few situations that made me think I should take a closer look at the aspect of *when* the fees are charged. Here some situations I have discussed with people within the past few weeks:

  • A family which had paid all of the agency fees before their homestudy was completed. The agency was barred from international adoptions and the family has lost the money they paid.
  • A family which applied to a particular agency because the agency was going to receive the file of a child they wanted to adopt. The agency was upfront about the fact that the family was not guaranteed to receive the child’s file. Another family ended up with that child’s referral, but because the first family had already paid several thousand dollars in fees, they ended up staying with the agency.
  • A family which applied to an agency but decided to change to another after reading some negative reviews. Although they knew they would lose the non-refundable application fee, they were shocked to be informed that because their application had been approved they owed a $2000 “service fee” even though absolutely nothing had been done by the agency.
  • A family found a child profile they were interested in on the “shared list” section of an agency advocacy site. The agency informed them that if they applied to the agency, they would help them find the file. The file was with another agency which refused to transfer, but now that the family had committed to the first agency by paying fees they didn’t have the freedom to switch to the agency which actually held the file.
  • I am aware of two different families who applied to an agency (they used different agencies) and started a home study but through different circumstances became ineligible to adopt before the home study was completed. Both families had paid an initial agency fee of around $5000 but both agencies refused to give even a partial refund.

We all know that adoption is expensive. Families are prepared to pay the cost of the adoption, but they usually don’t have the funds to lose $3000-$6000 if they start over with another agency. The timing of WHEN you pay the fees can give you flexibility if the first agency you work with does not turn out to be the best fit for whatever reason. I looked up the fee schedules (or tried to) for over 30 different adoption agencies with China programs. Let’s look at what I learned so you can make an informed decision when choosing an agency.

IMG_0179Fee Schedules– When I gave agency red flags, not posting a fee schedule on the agency website was one of the items I listed. A full third of agencies did not have the fee schedule available on their website or required I give personal information to receive it. Many of these agencies are the ones who do not have a good reputation. Some agencies only gave a general estimate for the costs of the China program without listing individual fees or gave fees without a timeline. The good news is that 20 agencies had at least a general breakdown of fees and when to expect to pay them. I’m sticking with my suggestion that if you don’t find a fee schedule on an agency website, don’t use them. There are plenty of agencies that give you the information you need to make an informed decision.

Application fees– Application fees ranged from $200 to $800. Application fees are not refundable. If you are considering an agency because of a waiting child, very few agencies will require an application fee to view a file. Most agencies can and will locate specific files for you free of charge because they hope to gain you as a client.

Home study– It came as a surprise to me to find that some agencies are expecting fee payment before the home study is complete. Remember that the purpose of a home study is to determine that you are eligible to adopt. Certainly most families pass the home study, but I would be hesitant to work with an agency which expects payment before you have been determined eligible to adopt.

Application approval/Contract signing– Of the agencies which had a payment that could be due before the home study was approved, most had the first payment tied to when the application was accepted or when the agency contract was signed. This fee was around $3000 with most of the agencies.  If this is the case with the agency you want to work with, consider not formally applying or signing the contract until after your home study is complete. The agency can review the home study and make changes once they have accepted you into the program. This is probably not going to work if the placing agency is also doing your home study, but it would give you the freedom to switch if you find a child at a different agency during the home study process.

Number of agency fees– It is most common for agencies to have three fees. These were typically tied to home study acceptance, referral or dossier submission, and a travel and/or post placement fee after the dossier is submitted but before travel. Here is my full tally:

  • Agencies with no fee posted: 10
  • Agencies with 1 comprehensive fee: 2
  • Agencies with 2 fees: 6
  • Agencies with 3 fees: 12
  • Agencies with 4 fees: 3
  • Agencies which required fee payment before the home study is finalized: 5

If you are not looking at an agency because you are pursuing a particular waiting child, it is beneficial to look closely at the fee schedule of potential agencies. Especially if you are anticipating submitting your dossier first to be matched with a LID child, choosing an agency which has multiple fees spaced out throughout the process will give you maximum flexibility if you end up switching agencies later. It is very common for families to begin the process intending to adopt a LID child but to find a waiting child through an advocacy group or site during the process. You might feel sure you will stay with an agency, but giving yourself flexibility is still a good idea.

Conclusion– My suggestions if you are choosing an agency:

  • Look for a detailed fee schedule to be easily available on the agency’s website.
  • Do not pay more than the application fee before your home study is approved.
  • Ask potential agencies if you can make payments on the fees or if it must be paid in full at the time it is due.
  • Ask for your agency’s refund policy. Does it vary if you voluntarily leave the agency versus if you are no longer eligible to adopt? Get the answer in writing.

If you are just beginning your adoption journey and found this post helpful, you might consider buying my book which has all of this information and more, including several chapters on travel.

10 Pieces of advice for older child adoption

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Debbie is the mother of two children adopted at an older age. She posted the following in a group for those considering older child adoption. She has allowed me to share on my blog as a resource.

In light of current events in my life, I’ve engaged in a great deal of soul-searching about our older child adoptions, and the effect on our family and marriage. I thought, what would I want to share, what things do I feel we did “right” vs “wrong”, what would we have done different knowing what we know now? What did we learn (or being quite frank, mostly me through these groups, reading, research, etc) from these last five years? So here goes…

1. Adopting an older child means bringing a person into your home whose personality is SET. One must be willing to take them as they ARE, not how you hope they will be.

2. Understand with older kids, healthy physically does mean healthy emotionally.

3. Don’t make your current children or yourself “act better” than usual to make things “easier” for the new child; be natural from the start.

4. Files are meant to promote the child, so they will often embellish or even eliminate the truth. Read between the lines. Be skeptical, yet hopeful.

5. The more information you can gather, the more people who’ve met the child, the more pictures and video you can obtain, the better.

6. Before you travel, discuss and write down a plan if x, y, or z happens. Decide you are a parenting TEAM. If you have different parenting styles, discuss it, hash it out. A teen will test you, figure out if you can be “played” against one another. Older kids come from a place of survival in a harsh system, no matter how “good” the orphanage is. Think about whether your marriage can take it…or not.

7. Support each other, especially if the child prefers one over the other. Listen. Don’t “check out” of parenting.

8. Understand this may be the hardest thing you might have ever done. There will be days you are on your knees in either prayer or thankfulness, often in the same day or even hour.

9. Your other kids still need you too. They are adjusting as well to the new dynamic.

10. Have some basic rules in place from Day 1, especially in regards to electronics, the internet, and QQ (a Chinese app kind of like Facebook). Monitor communication if you can until you can be sure it is healthy communication.

I can look back now and see all the moments we could have handled better but I can also see how hard we tried as well. Our efforts were mostly rejected by our son adopted at age 13, but we and he survived (he lives on his own now and we communicate), and went on to apply all that we learned with our new daughter (adopted at age 9), who is amazing by the way! We chose not to adopt a teen again, having learned where our personal strengths and weaknesses lie.

I hope these words are helpful in some small way; I just wanted to share my thoughts.

What I’m Reading #17

China’s rule changes have prompted many online discussions about best social work practices and their impact or lack thereof on adoption disruption. Child Welfare.gov has a short handout which discusses known risk factors for adoption disruption or dissolution.

The CCCWA has invited families or Chinese adoptees “who are interested in obtaining additional information about their child’s or their own pre-adoption background.” Some feel this is in response to the increasing popularity of families hiring private agents to find the birth family of Chinese adoptees. You can find the statement and contact info here.

Research-China is keeping a list of birth parents who are trying to find their child. The list is organized by city and orphanage. Matches are verified via 23andme.

Great post with considerations on adopting out of birth order or virtual twinning.

The Atlantic has a photo essay entitles The Chinese Art of the Crowd with visually interesting photos which are unique to the Chinese population.

The New York Times ran a photo essay with previously unseen photos of the Tiananmen Square protests of 1989.

InterCountry Adoptee Voices has an essay from a male Chinese adoptee from the 1990’s discussing his experience being a boy at a time when almost all Chinese adoptees were female.

Someone unearthed this article from Architect Magazine which discusses the US Consulate in Guangzhou as an award winning design.

An article in The Economist discussing the decline of adoption in America.

Instapots are very popular now. If you have one, check out this collection of pressure cooker Chinese recipes.

Liz Larson, an adoptive mom and counselor with a specialty in trauma, gives tips on how to build a loving bond with your child from day one.

Amy Eldridge of LWB writes this essay on the importance of permanence for orphaned children.

No Hands But Ours ran an excellent article discussing the practical side of adopting a child who is HIV positive.

From the WACAP blog, one mother shares her experience adopting a 7 year old boy.

For those of you considering adoption from China, the Stauffer family has been documenting their entire process on their YouTube channel. They are currently in China so it’s a great time to follow their journey. Some of the videos are on Myka Stauffer’s personal channel, such as one on what they packed for the trip.

File distribution in the China program

People who are considering or starting out in the China program right now are beginning at a time when the program is in transition. At the beginning of 2017, China stopped granting waivers, which had allowed families who did not quite meet all of China’s criteria to adopt. China made changes to their parent eligibility guidelines over the summer, as well as announced that the partnership system would be ending as of January 1st, 2018. I hope this post will help to explain these changes to those who aren’t sure what they mean.

Does this mean the China program is ending?

No. China’s international adoption program has been active for over 20 years. During that time they have made changes in parent eligibility as well as how the files are designated and distributed. The partnership program was a relatively new innovation in China’s program. Families will still be able to adopt from China without the partnership program.

What was the partnership program and why would they end it?

The One-to-One program, more commonly known as “partnerships” involved adoption agencies signing a contract with a specific orphanage in China. In return for providing material, medical, and/or educational support for the orphanage, all files prepared by that orphanage would be designated to that agency first for a period of time. Larger agencies might have 15-20 partnerships while small agencies might only have one or two. China’s ending of the partnership program, is likely a side effect of the law governing Non- Governmental Agencies (NGO) which went into effect January 1, 2017. You can learn more about the NGO law in this post.

If there are no partnerships, how will agencies get files?

Prior to the partnership program, all new files were added to the shared list once a month. Agencies will continue to receive files from their active partnerships through the end of the year, but on January 1st, 2018 all newly created files will presumably be added to the shared list. Files which reach Civil Affairs by the last day of December will still be sent to partner agencies when they are finalized, so partnership files will continue to trickle in for the first few months of 2018.

I don’t want to wait a long time to be matched. How do I know which agency will be able to match me fastest after January?

That’s a question no one can answer. Agencies are still giving match time estimates, but we really don’t know how things are going to go. Some agencies are experienced at matching off of the shared list while others relied almost exclusively on their partnerships for matching. Theoretically an agency with a long list of waiting families with you at the bottom of the list would take longer to match you than an agency with few waiting families, but until we’ve been on the system long enough for agencies to know what their average number of matches per month are, we won’t know for certain.

Will files still be designated LID only or Special Focus?

I would assume that these designations will remain. Losing the LID designation would only slow down the process for young children with minor needs because they could be locked by families without a dossier in China. Similarly, the Special Focus designation allows a greater amount of potential families to commit to a child that might be more difficult to place. Being able to lock a file without a dossier in China is a relatively new option, and it is only done in America. However, some families respond much better to an actual child that they have seen in a photo so this is a very effective way to place children. Hopefully this aspect of the program will remain unchanged. If you don’t know what LID and Special Focus files are, read this post.

Does this mean there won’t be any more agency photolisting so I can find my child first?

Possibly, but I doubt it. China has always had the ability to designate files to a particular agency for a period of time. I think it is likely that children who have been unmatched on the shared list for a few weeks or months will be designated to a specific agency so that the agency can advocate for the child. The “former shared list” program shows that China understands this is an effective way of helping overlooked files to be seen.

Isn’t it a bad thing if partnerships end?

There were certainly positive aspects to the partnership program. Agencies were able to improve orphanage conditions by providing material aid and training to their partner orphanages. CCAI and Holt, as the two agencies with NGO recognition, might be uniquely placed to continue to provide aid to particular orphanages or meet children in the orphanages. Holt announced that they have received consultative status on the Economic and Social Council at the United Nations. While CCAI does not have quite the same international presence for humanitarian aid, both agencies have a high reputation with the CCCWA and been involved in child welfare in China for a long time. We can hope that they continue their work in China alongside NGOs such as Love Without Boundaries or OneSky, in addition to the many China based organizations which exist.

A good aspect of the partnership program was that often agency personnel would advocate for files to be created for particular children they met, so children got the opportunity to be adopted who had been considered unadoptable by the orphanage director. Moving to the partnership ended the “feeding frenzy” for the most desired files because agencies knew that they would be receiving files from their partner orphanages to match. It’s possible that agencies might feel a certain amount of reluctance to invest advocacy resources into files which could disappear from the shared list at any moment. However, if designated file continue as I speculated above, that would help with this negative aspect.

The partnership system also gave families more time to have a file evaluated and come to a decision with less pressure. Shared list files can only be locked for 72 hours. It can be difficult to get a file review in that amount of time, particularly over weekends or holidays. Sending questions for a file update would presumably be out of the question.

Can you give me any good side to moving back to an all shared list system?

The partnership program was not without its downsides. Partnerships were an almost exclusively American phenomenon. Most other countries could not enter into a partnership contract because of their governing laws or interpretation of the Hague agreement. This made it very difficult for families in other countries to be matched with a child, particularly those in countries with restrictions on the age or special needs of the child to be adopted. The partnership system always carried the risk of encouraging corruption. Would orphanages feel pressure, implied or actual, to provide a certain amount of files for young children with minor needs to justify the agency’s “investment” at their orphanage. Moving back to an all shared list system will level the playing field in that case. Regardless of country or size of agency, all will have the same access to new files.

It will also make it easier for people who have identified a particular file to use their preferred agency to lock the file and complete the adoption. However, since people often identified files through the advocacy efforts of agencies who had the file designation, this might happen less often.

 

I know that any changes in the China program cause people to feel uneasy. We like consistency and predictability. Be assured that families were matched through the shared list for many years. People like myself continued to be matched from the shared list even when most agencies had partnerships. While there were many advantages from the partnership system for families, the China program will continue to be a wonderful program for families even without agency partnerships.

 

Using the Guangzhou subway

These directions with photos were compiled by Amy, who was recently in Guangzhou. You can read more detailed directions (but without pictures) on how to take the subway from the China Hotel to Shamian Island in this post by Elizabeth at Ordinary Time. Yvette at Bringing Home Holland has a post on how to get to the Safari Park from the China Hotel which includes pictures, but is from 2011.

So from the Garden, you walk out the front door and to the right and will find a station almost directly in front of the hotel. Take the escalator down. The China Hotel also has a subway station adjacent, next to the 7-11.

Once you are in, you will come to a bank of ticket machines (look similar to an atm). There is a green button on the bottom right of the screen to change to English, if you wish.

 

You choose, from the bottom, the line you wish to get off at. Then you touch the station you wish to get off (ex. We got off on Beijing Lu to walk to the Pearl River cruise).

If you have more than one person in your party, then touch the number at the right to get tickets for all (if you have a really large group you may have to make multiple transactions).

Then simply deposit your money. It does not take 1 yuan bills, only 1 yuan coins and larger bills (think small bills). For us to go to the cruise was 3 yuan each, one way. Shamian island was 4 yuan each one way.

Once your money is deposited, green coins are dispensed (like a vending machine). Collect your coins and go to the set of “gates” You simply touch your coin to a little pad thing (watch the locals), the gate opens, and you walk through.

Follow the signs to your train. Once you’ve reached the train platform, look and see which one you need. There are large signs that list each stop along the route. Find the train going your direction and wait in line.

For most destinations, you will change trains. Simply follow the signs and choose the correct train once at the platform.

Once on the trains there is a map of stops, as well as, a flashing sign that lets you know the next stop of the train.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

When you reach your destination, follow the signs to exit. Just before you go through the “gates” again, look for the large sign to tell you whether you need exit a, b, c, etc.

When you exit, you will deposit your green coin and leave. When you start your journey back, you will do it all over again.

Google maps is your friend. It will show you the stop where you need to exit. Take a screen shot and you can always ask locals to help once you emerge from the subway. Ask at your hotel concierge desk for a subway map. You can also find a metro map online here, along with detailed information about the various lines. Have fun and enjoy.