Common Special Needs in International Adoption

Are you considering international adoption? If so, this interview will help you decide which special needs are a good fit for your family. We'll talk with Dr. Dana Johnson, MD, PhD. He is a Professor of Pediatrics in the Division of Neonatology at the University of Minnesota Medical School. Dr. Johnson founded the International Adoption Clinic at the University of Minnesota. He is a dad and granddad by birth and adoption.

In this episode, we discuss:

• International adoption has become overwhelmingly a special needs adoption program from all countries. Prospective adoptive parents are required to fill out a form stating what special needs they will accept.
• Most common special needs. What are they and how involved is the post-adoption care? 
  • Cerebral Palsy
  • Heart issues
  • Craniofacial
    • Cleft lip/palate
  • Developmental Special Needs
    • Autism
    • Down syndrome
    • Developmental Delays
  • Hepatitis B and C
  • HIV
  • Orthopedic special needs
    • Clubfoot
    • Limb or digit deficiencies
  • Albinism
  • Hearing loss
  • Vision Loss
  • Urogenital
    • Kidney abnormalities
    • Urethra issues
    • Bladder issues
    • Imperforate anus
    • Ambiguous genitalia
  • Emotional/Trauma
  • Older kids
  • Sexual Abuse
  • Prenatal Exposure
• How can adoptive parents support and advocate for children discriminated against due to physical, cognitive, and other disabilities?
• What type of special needs do you see from the major placing countries?
  • India
  • Colombia
  • Bulgaria
  • Ukraine
  • South Korea
  • Haiti
  • African countries

Transcript

Please pardon any errors, this is an automated transcript.

Welcome everyone to Creating a Family, talk about foster, adoptive and kinship care.
Welcome back to our regulars and a special shout out welcome to our newbies. And
just a reminder to everyone, we are now on YouTube, so if you want to see us in
person and see our esteemed guest in person, you can check us out on YouTube.
I'm Dawn Davenport, I am the host of this show as well as the director of the
nonprofit, CreatingaFamily .org. Today, we're going to be talking about common special
needs in international adoption, and we're gonna be talking with Dr. Dana Johnson. He
is a professor of pediatrics in the division of neonatology at the University of
Minnesota Medical School. He founded the International Adoption Clinic at the
University of Minnesota, and he is a dad and a granddad by both birth and adoption.
Welcome, Dr. Johnson, to creating a family. We are so glad to have you. It's just
delightful to be with you again, Don. I enjoy speaking with you and with your
audience very much. Well, international adoption has become overwhelmingly a special
needs adoption program from all countries now. It didn't used to be, and I think
people sometimes don't realize is that truly that is what it is now. And we're
gonna talk about what we mean by special needs shortly. But perspective adoptive
parents are required as part of the adoption process to fill out a form on what
special needs they will accept. And by what they will accept, what we really want
them to focus on are they the best family for this child, both at the short term
as well as for the long term. This interview is intended as an initial overview to
help parents know what they need to research further. So after you decide which
special needs would be the most possible good fit for you or your family, you then
need to do further research to learn more. Alright we're going to start by going
through the most common special needs in international adoption, what they are, and
how involved they are in post -adoption care. Then we're going to move to cover the
most common special needs you will see from the major placing countries. So without
further ado, let's jump right in. All right, one of the most common special needs
is cerebral palsy. What is cerebral palsy and how involved is it for families and
for the child? Cerebral palsy really is one of the most common special needs that
we see coming from other countries and loosely defined cerebral palsy as a fixed
motor disability that starts during infancy and generally is non -progressive.
So what I mean by that is that it primarily affects the motor system and not
cognitive abilities, although there is a blending of cognitive and physical
disabilities in the more severely affected kids. The other thing about cognitive
disabilities is that if one side of the brain is affected more than the other, you
do see cognitive disabilities in those kids as well. It used to be thought that
cerebral palsy was primarily related to problems during gestation and the delivery
process. For instance, a baby didn't get enough oxygen and was asphyxiated at the
time of birth with very low hep cars scores. We know now that it's a much broader
situation than that, and that genetic components also may lead to the development of
cerebral palsy as well. The difficulty with parenting a child with cerebral palsy is
that the spectrum is extremely wide. So it ranges from kids who have very minor
motor problems that only a pediatric neurologists would be able to pick up. They're
fully functional, cognitively able, and really blend in with the general population
very well. And it goes all the way to kids who are totally dependent on parental
care and severely cognitively disabled. So I think that that's one of the
difficulties that parents face. But with a referral, when you have a referral,
would you not have that information at the time?
Yes, what the future might hold for that child. If in rare circumstances you are
referred a premature infant who is six months of age, it may not be readily
apparent because they have not made very many motor milestones by that time exactly
how severely affected they might be. Yeah, that makes sense. All right, let's move
on to another common special need, and that is heart issues. And That is a hugely
broad category I realize, but if you can hit the high points of what to look for
in making this decision of whether you're the right family for a job with heart
issues. Certainly. Heart issues are very common in the general population, probably
two or three percent of kids will have some type of congenital heart problem. Most
of them are minor problems or problems that are easily fixed with surgery,
or even non -surgical means, others are more complicated and involve lifelong issues
that need to be followed by a pediatric cardiologist. So your usual small heart,
small holes in various parts of the heart, atrial septal defects and ventricular
septal defects, generally are fairly straightforward in terms of care if they need
surgery that can be done relatively early in life with very low morbidity and
mortality. The more complicated ones that involve abnormalities of the great vessels,
abnormalities of the drainage of the pulmonary venous system are much more difficult
to take care of, although the progress that's been made over the last 20 or 30
years has been pretty remarkable in terms of how well these kids do. What I would
say about heart problems is that they should contact a pediatric cardiologist.
Usually the information we get about heart defects is pretty complete. So there are
echo reports that will tell you what the structure is. And from that, a good
pediatric cardiologist can tell you what course of treatment might be available and
whether or not they're going to be future disabilities that might be considered. And
something I would also suggest is note how close you are to a good pediatric
cardiologist or to a center that does the surgeries, that does follow -up care,
because if you're located a far distance away, you need to factor that in to your
life. Do you have the ability to have a child that is being brought for regular
checkups and the distances is in hours versus minutes. Exactly. Something to consider.
All right, what about craniofacial issues? And again, I realize that this is a broad
category, but if you could tell us in general what you're seeing. Well,
you know, the most common craniofacial issues we see are cleft palate and cleft lip.
And the one thing I would say is that both cleft palate and cleft lip are
associated with other malformations in other organ systems. But the one that you
should think of with a distinction is that children with cleft lip and cleft palate
tend to have fewer abnormalities in other organ systems than children who have cleft
palate alone. There are centers around the country, pediatric hospitals,
that deal with great craniofacial malformations. They can be extremely complicated,
involve most of the bones of the skull as well as the face, and require a
multidisciplinary team of craniofacial surgeons, ENT specialists, and a team of
audiologists and speech and language pathologists to fully rehabilitate kids.
But it's pretty remarkable at what can be done with kids with facial malformations
these days. Certainly, if a child has a cleft lip and cleft palate,
there are a number of centers around the country that are certified by a cleft lip
and palate association. They have the teams necessary to totally rehabilitate a child
and really it's pretty remarkable both in terms of the physical appearance of a
child with cleft lip and palate, as well as the functional abilities in terms of
speech and language, swallowing, chewing, and generally getting along well with a peer
group. - And again, the operative thing that I heard you say was that a lot of
progress has been made and these kids can do very well, but they do better when
they have a team approach for their rehabilitation surgery and things such as that.
So, find out where such a center is in relation to where you are located and make
a decision based on that. Exactly. All right. Now, let's talk about developmental
special needs, both in general and then specific autism and Down syndrome. Sure.
Let me talk about Down syndrome, because I think most people are pretty familiar
with and have met kids with Down syndrome, very common chromosome body and extra
chromosome number 21. There are a number of problems that these kids can have,
basically abnormalities of all major organ systems, heart, kidneys,
gastrointestinal tract, et cetera. Cognitive disabilities are universal in kids with
Down syndrome. They all have cognitive disabilities, some worse than others. It's very
difficult to predict at the beginning how severe the cognitive disabilities are going
to be, but these kids are going to require some degree of parental involvement for
their entire life. They may be able to live in independent living situations with
supervision later in on in life, but adopting a child with Down syndrome means that
you're going to be a parent for the rest of your life. This is not a situation
where you're going to send them off to college and but can go out on their own.
Yet, it's very, very common for parents to want to adopt children with Down syndrome
because they are wonderful children. They're loving and extremely warm kids and had a
great deal of spark to the lives of families. There are ongoing issues.
Again, the American Academy of Pediatrics has well developed guidelines for medically
following kids with Down syndrome. For instance, these kids have high incidence of
hypothyroidism, they require treatment. And then probably the most common thing is
that they have hearing and speech problems and need to be followed very carefully
for that. So again, as Don has mentioned, find out what the resources are in your
community, many hospitals will have Down syndrome clinics that will follow these kids
very carefully and provide the care that they need. And also make sure you check on
your health insurance. Again, the kids require a lot of medical intervention and
consequently you wanna make sure you have good medical insurance, not just for
surgical procedures, but also for rehabilitation services, physical and occupational
therapists make a big difference in how these kids do. It's a good point. In
general, if you are thinking of adopting a child with special needs, lower your
deductible.
Just in general. All right, what about autism? How common is that? How common is it
diagnosed in children who are being placed internationally? Well, I wish I had
numbers for you about that. So the incidence of autism, as everyone has heard,
has increased dramatically over the last 20 or 30 years. Now,
much of this is due to different ways of diagnosing and increasing the spectrum
that's considered autistic. But there probably is some real increase, probably from
environmental issues in the incidence of autism. Autism is like cerebral palsy in the
sense that It's a very, very broad spectrum. You can have people who are completely
functional, but lack the ability to interact on a personal basis that would fit into
an autistic spectrum. And you have children who are profoundly cognitively impaired
with severe behavior problems that require extraordinary intervention or also on the
autistic spectrum. So, again, it all depends on how severe it is as to how well
families will do. The earliest that autism is currently diagnosed,
although people are working on better methods to diagnose it as an earlier age, is
around two years of age or a little bit older. Some kids aren't diagnosed until
they're four or five. Another reason that we want to diagnose it early is because
intervention does help and so the earlier the interventions can begin, the better off
the outcome can conceivably be. But the incidents in children who are adopted
probably is the same as it is for the general population with the caveat that when
we saw kids coming from Eastern Europe, especially from the Romanian orphanages where
they were very probably taken care of. There was an entity that was named
institutional autism or quasi -autistic behavior that occurred in these kids.
It looks just like autism, but by the experts that looked at these kids, probably
wasn't due to the same things, it was probably due to profound neglect within the
orphanage environment that these kids have. So you can see it in situations where
children are profoundly affected by the environment, that's probably different than the
regular autism we see in the general population. But again, we're not seeing kids
coming from orphanages that are as bad as that. So we are not seeing that now.
Yeah. Well, that leads us straight right into talking about developmental delays,
because that's a hard one, because we know that children who are coming from child
welfare institutions often haven't had the stimulation or the experiences, very often
have experienced neglect, abuse, whatever in their prior life. All of these can
impact their development and delay their development. So how do we know when we are
a child we're looking at it's five and their referral says they're functioning on
I'd say a three -year -old level. How do we know how much of that is caused by the
fact that they have never had somebody sit with them and induce string activities or
whatever and exercise their eye hand and their pinchers and things like that versus
the fact that this child might be developmentally delayed? - Sure. So we have a
fairly good idea of progress of delays, the time course of delays with an
institutional care. So we know that in terms of motor development, kids are very
motor developmentally delayed. They totally start being able to move themselves around.
So by 10 or 11 months, kids are able to get around the crib,
stand and walk with assistance from holding on. And they make great developmental
gains after that. So by the time they're 18 to 24 months, they generally, in terms
of their gross motor activity, are in pretty good shape. Their fine motor activity
may delay a little bit, but if you see a child at three years of age who is
profoundly motor delayed, that would be unlikely due to living in an orphanage.
They also have significant speech and language delays up until maybe two or three
years of age where they start catching up. They are probably not age -appropriate,
even when they're four or five in terms of language, but they're able to communicate
more. So by the time a child is five or six years of age, their motor skills and
their language abilities should be not age -appropriate, but perhaps they're functional
at that age. And so If you see kids that are profoundly developmental delayed in
any of the areas, it's unlikely due to a neglect that we see with an institutional
care. It's much more subtle at that age when we think of institutional delays.
Again, developmental delays can be severe, they can be minor,
but when we get our referral, it's kind of a snapshot of where the child is at
that particular point. So what we'd like to see is some type of an evaluation on
the repeats itself over the course of time. So for instance, a child is in an
institution for 15 months and then gets placed in a foster family. So we'd like to
see a report at 15 months and see what they can do. Then we wanna see what
happens when they get put in that foster family, how rapidly improvement is, because
the environment of a foster family is going to be much more nurturing than the
environment of an institution. And if we see tremendous improvement when that child
is in the foster family, then we can be pretty certain that the delays that we saw
in the institution are due to institutional care. If we have a child who's been in
foster family for their entire life, it still has significant developmental delays.
I'm very more concerned that those
so that we can get what would involve kind of an infinite use score on how they're
doing. You know, if they fall somewhere within the normal range, we know that
they're likely to improve, may get into their adoptive family. If they're way below
the normal norm, then we start worrying that there probably are some disabilities
that are involved in that delay that may be permanent.
Let me pause this terrific interview right now to ask a favor of you. We are
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So now I'll let you get back to the interview. So thanks.
Okay. How common now are hepatitis B and C? And let's go ahead and throw HIV in
there as well. How common is that? They certainly have been common in the past, at
least B and C have been. How common are they now? Well, when I first started in
adoption, hepatitis B was the big deal because there was no hepatitis B vaccine and
parents who were adopting primarily from Korea where the children got the disease
transmitted by their mother at the time of birth were definitely afraid that their
child would be singled out for discrimination because they had hepatitis B and people
would be worried that their children would catch it from them. Since there has been
hepatitis B vaccine that problem has potentially gone away. And also with hepatitis B
vaccine and prophylactic use of immunoglobulin against hepatitis B at the time of
delivery, the incidence of hepatitis B is drastically going down. So we don't see it
very often. We do see it periodically, but generally speaking, it's not a major
issue now in inter -country adoption. Hepatitis C is much more difficult to get from
a birth parent. So comparing hepatitis B where you have about a 90 to 95 % chance
of catching it from your infected mother if you're not treated at the time on
birth, it's only about a 5 % chance of getting hepatitis C. The other thing about
hepatitis C is there's very effective drug treatment now for hepatitis C that can
eliminate it. So hepatitis C, while we like to know about it is not something that
we necessarily worry about for the long term. HIV has gone down dramatically with
better treatment of pregnant women with suppressive drugs and treatment of newborns.
We do have parents that seek out children with HIV to adopt and it's a chronic
disease. These kids generally are doing quite well and have a a very good chance
for long and productive life with appropriate medical management of their disease. How
about now moving on to orthopedic special needs? And I believe the most common would
be clubfoot or limb or digit deficiencies. How common and what is involved with
aftercare? Sure. Well, clubfoot can be caused by a number of different things.
Probably the most common things that we see that result result in a clubfoot -like
deformity is intrusion, uterine positional problems. So they've got their feet stuck
under them in a strange way. There's not much room to move around on the uterus,
and so they come out looking like they have a clubfoot deformity, which is really
just a positional deformity that usually responds very nicely just to manipulation,
physical therapy, and maybe some bracing. A true clubfoot deformity can be caused by
a number of different things, but in isolation has a very, very good prognosis.
The orthopedic surgeons are very aggressive in taking care of these, so that surgery
is usually not necessary, although occasionally it can be. There are some very severe
types of clubfoot deformity that go along with neurologic conditions that prevent
movement in the lower extremities, such as spina bifida, where you don't have
innervation to those muscles down there, and that poses a much more long -term
problem. With digit abnormalities, many families will have children that have an extra
digit on the side of their little finger. It's called postaxial extra digits, and
that generally is not something to worry about. they can be taken off at any time
by a good hand surgeon and with no long -term disabilities. If you have extra digits
on the thumb side, that's much more of a big deal. That requires surgery and maybe
associated with other abnormalities as well. We see a lot of missing digits,
missing extremities, amputated extremities from something called the amniotic band
syndrome. These are little fibrous connected tissue bands that wrap around developing
extremities and digits and auto amputate them as the child grows and the ligature
becomes more constraining. In those situations, what you see is what you get.
It's usually not associated with other abnormalities. And if you have a disability,
an orthopedic disability as an infant, it's pretty amazing what you can do. People
type with their feet. People do very, very well without digits or toes or even
extremities when they have the ability to adapt their brain right from the start
with the loss of that extremity. Albinism. I see a lot of that.
And when people are asking questions about what common special needs, so I don't
know know that it's increasing per se, but what is albinism and what is involved
with caring for a child with albinism? Yes, albinism is a group of disorders that
are primarily characterized by the lack of pigment or velocity of pigment.
So these kids have extremely light skin and light hair. Now,
most people are aware of the fact that if you have very by skin, you tend to
sunburn very easily, and you are at risk of skin cancers. And that certainly is one
of the issues in children with albinism. But the one thing that people often don't
know is that these children almost always have a compromise in their visual
abilities. So these kids can have low visual abilities or even most of being blind
in some situations, because the pigment production in our skin is also mirrored by
pigment production in our retina. And without that pigment production, your visual
acuity is not very good. So when you're thinking of adopting a child with albinism,
not only do you have to think about protecting their skin from some damage, but you
also have to think about their abilities with vision, 'cause many of these kids are
disabled in terms of visual ability and the need to follow up with an
ophthalmologist not only for the decreased visual ability but also because they have
eye movements called nystagmus that often make the visual disability even a little
bit more difficult. And let's go ahead and talk about vision and hearing loss. There
are a lot of different ways that we receive children who are visually compromised.
One is that the eye feels to develop. So you have a condition called anaphthalmia,
which can be either unilateral or bilateral, where the eye never develops. And
therefore, there's no vision in that eye at all. For some kids, the eye is the
only thing that's affected. But remember that the eye is part of the brain and
develops as part of the brain. So if you have an abnormality in one part of the
brain, the likelihood is that you may have abnormalities in others, too. So you can
have pretty severe cranial abnormalities. You can have minor ones that affect your
endocrine status, or you can have it limited just to the high. It's important to
find out how the brain is functioning in those kids that have endophthalmia. - Are
there other forms of vision loss that you see? - Sure, we can see kids with
congenital cataracts, which will compromise their visual status if that's not taken
care of very early. In pregnancy, we see a lot of kids with strabismus or eyes
that don't have a conjugate gaze. They're not tracking the same way. One eye looks
like it's wandering. That's probably the most common thing we see. We see it in
children very frequently and more premature babies, but there are good treatments for
it. And generally speaking, if the treatment for astrobusiness is initiated in the
first few years of life, the visual outcome is pretty good. - And we're seeing that
children are being treated in their country of origin as well, because this is
obvious that they have this issue. Exactly. Okay. All right.
Now, let's move on to talking about urogenital issues. If you could talk about the
more common ones, and again, how involved is after parenting care? Sure.
So, there are a wide variety of kidney abnormalities. Kidneys are organs that will
frequently be associated with both major and minor abnormalities. They're often not
known before the child arrives, but for the most part, the urologists that take care
of pediatric patients are extremely good about being able to fix almost anything that
might be wrong anatomically with the kidney. Of course, there are diseases that may
involve other issues, but the one we see most commonly is structural abnormalities of
the kidney. Externally, we see abnormalities of where the urethra exits the penis,
for instance, but those can be taken care of surgically. And then we can progress
to more severe abnormalities, which involve extrafee of the bladder, where the bladder
is actually exposed and open, or extrafee of the cloaca, which includes both extrafee
of the bladder and extrafee of the rectum, too. And these get much more difficult
to correct with more severe abnormalities. One of the other things that I would add
at this point is disorders of sexual differentiation or an ambiguous genitalia.
When we see these conditions quite commonly, they're very complicated and this
involves not only medical but social issues as well. So it Now,
there's been a movement, of course, to make sure that sex is binary, we have males
and we have females in many states of inactive legislation to make sure that you
can't change your gender after helping this different on your birth certificate. Now,
the problem is that it's often difficult to know the gender is or how that person
will function as a male or female later in life, based on what their appearance is
at the time of birth. What about genetic testing? Is that no longer considered? Yes,
genetic testing is very important, but we know that there are people who are
genetically a male who are physically a female because they lack the receptor for
testosterone. So, the Development of the external genitalia,
if there is testosterone, that person will usually become a male with a penis and a
scrum without testosterone or the receptors for testosterone. The default position is
that you will develop as a female. So there are genetic males who look like and
function as completely normal females, And there are genetic females who grow penis
because of endocrine problems and look like they are a male at the time of birth.
So I think if you are going to adopt a child with ambiguous genitalia, you know,
we talk about families being able to step out of the box and take a child who may
not be a child that fits into the normal categories. And I think for ambiguous
genitalia these days, that family has to be very special and has to be very
knowledgeable about what the possibilities might be in terms of future corrective
surgery, how they would live within the society that they are placed, how they're
going to be considered, whether they're going to be considered a full person. And
the other thing to remember is that some children who are labeled as a male or a
female within big U.
issues when they're thinking of adopting a child who may have a disorder of gender
differentiation. They have to be willing to live with the unknown because, as you
well said, what we're learning now is that we have to wait. I mean,
it used to be that immediately they would do a genetic test, and if, you know,
depending on XXXY, then they would perform surgery. but we're realizing now by
talking with the adults who had these surgeries performed on them, that they're
often, we've missed it. We've missed what they are supposed to be, because as you've
talked, it's far more complex. And I'll also say, I'd be curious to see your
experience, but my experience is that these are some of the hardest kids to place
because of the, as you say, needing to live with the unknown and allow things to
develop as they're supposed to develop. This is not something that you can just,
this is not a problem to be solved. This is a child to be raised. Exactly,
exactly. And I think these kids are very difficult to place. But over the years,
I've seen a lot of families step up and be willing to live with this uncertainty.
Although I would say that it's getting more difficult to deal with some of the
social issues that have come up surrounding these kids. And that's unfortunate for
the kids and for their parents. Going backwards just a moment, did you talk about
imperforated anus? I thought you might have generally hit upon it, but you may just
been talking about the bladder and urethra. Okay, so imperforate anus is where the
anus and the intestine don't meet up. So in baby girls, 80 % of them have what's
called a low ending of their imperfection, which means that there's not very much
distance between the colon or the rectum and the anus. And often we'll have a
fistula that goes into the vagina or into the perineum somewhere that allows stooling
it out. Boys, it's the opposite way. 80 % are high. And those kids,
the greater the distance between the rectum and the anus, the more difficulty it is
to connect them up. So for girls, it's a little bit easier to do a primary repair.
For boys, quite frequently they'll do a colostomy and then repair them when they're
a little bit bigger because you wanna get the correct relationships between the
rectum and the anus so you have continents of stool. This is a pretty common
defect. There are excellent pediatric surgeons around again. Check where your surgical
consultation is going to be. But this is a condition that frequently is taken care
of quite well. And for as far as aftercare, post -adoption,
long -term care, do they usually achieve stool continence or How does that impact?
I mean, will these children be able to control their bowels? - Yeah, so most kids
do achieve still continents with appropriate surgical and post -surgical care.
- Let me pause here for a moment to thank one of our partners. It is through the
support of organizations such as Hopscotch Adoption that we are able to bring you
this podcast. They have been a long -term supporter, not only of the podcast, but of
creating a family in general. Hopscotch Adoptions is a Hague accredited international
adoption agency, placing children from Armenia, Bulgaria, Croatia, Georgia,
Ghana, Guyana, Morocco, Pakistan, Serbia, and Ukraine. They specialize in the placement
of kids with Down syndrome and other special needs, so this show is particularly
relevant. They also do a lot of kinship adoptions. They place kids throughout the U
.S. and offer home study services and post adoption services to residents of North
Carolina and New York. Thank you so much, hopscotch adoptions. And now I will let
you get back to Dr. Johnson. Okay, we have been talking about physical special
needs. Now I want to move to talking about emotional special the impact of trauma.
So let's, let's just, that's a huge category. And I think we need to spend some
time on it because we certainly know that the majority of children who are being
adopted internationally, well, quite frankly, I would say all no other thing that
they have, even if they've been in a very good situation in their birth country,
they're being removed from everything they know, even though we would say that's in
the long -term going to be in their best interest, it's still traumatic. So let us
just say that the vast majority, if not all kids who are adopted internationally,
have experienced trauma. So let's talk some about the impacts of trauma on the
child. And then I want to move into how much we will know before a child is
placed with us about what the child has experienced. But first of all, let's talk
about the impacts of trauma in general. And the types of trauma you see children,
the common types of trauma that you see children have been experienced when they're
placed for international adoption.
- So the word trauma is used frequently in these kids. And I think we need to make
sure that everyone understands that, you know, trauma is not a physical trauma
necessarily, although abuse, physical use can be a traumatic event. But for an
infant, not being nurtured is a traumatic event. Not being paid attention to children
who are neglected, children who spend their early life in adverse situations like an
orphanage where no one gives them individual care. This all is defined as trauma for
an infant. So we know that trauma has effects. And when I talk about trauma,
I talk about the three P's.
develops very, very early if you are in an adverse environment. Growth has affected
your mental health in terms of your externalizing and internalizing behavioral
problems, and your cognitive abilities are all affected by being in an adverse
environment. So it's traumas -bad. I mean, it affects kids universally,
And of course we want to avoid that. The one thing I would say, though, is getting
into a nurturing environment always improved the outcome of kids who have sustained
early adversity.
So an adopted family who was nurturing and who was able to provide contingent,
responsive care to their child will help undo many of the issues that come up in
that ever situation that they experienced. How common is it to get good information
in the referral documents so that a parent who is considering who's going through
that checklist, although honestly, I'm not sure trauma is on the checklist anymore
because, as we say, it is so universal, but are parents able to know how accurate
is it? Are parents able to know what the child has experienced and how the child
has been impacted? Because again, we're not usually talking about infants here. Right.
Well, it's, you know, you'll often frequently now with furrows coming from the
countries that we see active and get a country adoption. We do know how long they
spend with birth parents, institutional care, foster parents,
et cetera. So we can get some kind of an idea of the general environment that
these kids have been in. In some countries, and then Columbia comes to mind as one
of the countries where we have the most information, is that they have a very, very
extensive social welfare system that really provides a lot of details on the
environment that the child has been in. So we'll often know what members of the
family, the members of the families, you know, what the home like was like. And,
you know, in some situations, we can tell, you know, this is a child who we see
know was living in a chaotic environment, drug -abusing family, who basically were out
on the street all the time and living as feral children. So we can say with a
good deal of certainty that this child has had a long sustained period of trauma
that's going to affect them and need a lot of recovery from. On the other hand,
you know, we have in Korea, we have childhoods delivered in the hospital of seven
days went to a foster family and they've been there for two years. It's very
consistent here. And we can know that the environment's pretty good. You know, kids
coming out of foster care as best if it's and consistent and nurturing foster care
generally look like kids brought up with family. So I think we have a pretty good
handle from most of the referrals that we're seeing now on kind of the environment
that a child has been in and how much adversity they've sustained during that period
of time. The other thing we can look at is kids who are living in a environment
don't grow very well. So, I mean, I think we can look at growth as a measure of
the environment and nutritional environment as well. What about the age of the child?
We know that children, as I've alluded to throughout this interview, are often coming
to us now at an older age as it used to be. You would see infants or young
toddlers being placed, but we don't see that as much anymore. And so the kids
coming over are very often over the age of five. - Yes they are. - So what do your
parents think about when they're adopting a five year old, a 10 year old versus a
one year old? - Right, so I think you should look at the duration of time that
that child was in an adverse environment. So there are some kids, and I've met
these kids occasionally, who are the true orphans that we used to think about,
where both parents were killed in a house fire and the child survived, but was
placed in an orphanage at five years of age. And they've only been, you know, they
lived with a biologic family for most of their life, and they've only spent a short
period of time in an environment that would be considered adverse. And I would be
very optimistic about how that child was going to do other than the fact that they
lost their parents, and that certainly is a traumatic experience. Or you can have a
child who, you know, has lived in institutional care for the entire time since
they've been born. And that's a very long duration of adversity. And so I would
look at the duration of adversity. An age can be something you pay attention to,
but it all depends on where that child has been. The other thing that we know
affects outcome is how many changes of environment that that child has been in.
When we look at growth, when we look at mental health issues, the more that child
changes environments. For instance, in the U .S. foster system, they go into foster
care, then they go back to the birth parent, then they go into foster care, then
the birth parent feels again. And so you get kids who are three and four and five
years old who may have spent time with in foster care, but they've been back and
forth and back and forth. Each time that they change the environment, that is a
negative effect on that child. So not only the age of the child,
but how many times that they've changed caregiving situations makes a big difference
in their mental health. How common is sexual abuse,
and how often is that information shared before a child is placed?
I will say that children who are without parents or without functioning parents are
at high risk for sexual abuse. So how common is it that you see, and then how
often is it included in the referral information? Yeah, we don't see it very often
in referral information. We do occasionally get situations where a younger daughter
has been molested by an adult or even a father. So that is present in the in the
referral information. But we see a lot of situations where we suspect that there are
probably there was a high likelihood of sexual abuse, where the birth parent perhaps
age -gaged and prostitution would have people come to the house and, you know,
a repurated little girl is being placed for adoption. We used to say that,
you know, if you look at the limited amount of data that's available from
institutional care situations in Eastern Europe, kids who lived in the older kids'
institutions, especially where they were majors, very, very high risk,
although we never heard it in referrals of being sexually abused. And it was by the
older kids in the orphanage, and boys, perhaps more so than even girls,
were sexually abused. And it could be as bizarre as it sounds,
abused by caregivers to female on male abuse. So,
you know, bad things happen to kids that are unsupervised and pedophiles find
situations where they are not going to be detected in institutions. I talked to
people who were in the government and they would frequently route out pedophiles
within orphanages because that's where they would go. So, if you're adopting an older
child, especially a preteen, I think that's something you should think about and be
very cognizant about and look for precocious sexual behavior in the child just to
make sure that you are aware that that kind of thing happens, unfortunately. And
have a plan in place, work with the assumption that you don't know and that it is
a possibility and have a plan in place to protect other children and the family
until you have had some time to know this new child coming in. Exactly.
Exactly. And so, because your obligation is to... And there's a lot of ideas out
there for how you can do this. Creating a family has a lot of information on
exactly how to do this. You can search our site for sexual abuse. We also...
I always say this when we talk about sexual abuse, because I worry that we are
victimizing the victims here when when the assumption is that children cannot heal
from sexual abuse and that they will become predators. In fact, children can heal
and the incident of children becoming predators is not that high. So there are
definitely things that can be done, but you do need to be aware going in about the
possibility. And And we have a lot of resources on our site about how to help kids
heal from sexual abuse. All right, now an area that is near and dear to creating a
family, and that is prenatal substance exposure, alcohol, or drugs. We have a lot of
information. This is extremely common in the U .S. foster care system and even
outside the foster care system, but even with the domestic infant adoption, the
incident is higher than average. So how common is it in the children you see?
And then in our next section, we're going to be, we'll talk about what are the
most common special needs by country and you can address each country. Okay. But
just in general, how common is it and what are the impacts and what do parents
need to think about both for the short and the long term? Well, I think that
substance exposure within the group of kids coming for adoption is probably similar
to what we see in the United States. Our foster care system, you mean? Right,
exactly. So we do run into it very commonly. So there are lots of drugs that
people can abuse. Many are illegal. Some are legal. And ironically,
it's the legal drug, that that seems to be the one that affects children the most.
The difficulty of saying anything definitive about an exposure is that people rarely
use one drug. They're often drinking, they're using cocaine,
they're using narcotics, and they're also living in situations that they're not
getting good nutrition, they're not getting good prenatal care, high stress, They're
poor, high stress. So there are many, many factors associated with substance abuse
that are independent risk factors for outcome for these kids.
So, you know, there are no scientific studies of, you know, upper middle class women
who got good prenatal care and who use cocaine every day. So we don't know what
the independent effect of cocaine might be 30 years down the road in terms of
mental illness, cognitive behavior, etc. There's a whole mishmash of things that are
impacting our follow -up studies on these drugs. So I think,
you know, a couple very broad points. One is if you're concerned about a drug,
be concerned about alcohol. Maternal alcohol use can cause significant malformations.
It can cause significant brain damage and it can affect long -term mental health and
cognitive abilities in mothers who use frequently in large amounts. The other drugs
that we often think of, there's not as much data about them. We do know that there
are effects that are associated with drug use, but there are a number of studies
that are related to drug use.
is a nurturing, loving, responsive home makes a huge difference in outcome.
So if you look at the number of studies that have looked at general adversity, drug
exposure, et cetera, the difference between growing up in a birth family versus
growing up in the adoptive home make a huge difference in terms of the outcome.
So, you know, I tend to look at the world through rose -colored glasses. And I'm
very optimistic about many kids who haven't had exposure. Kids with alcohol exposure,
especially if it's been heavy, I think families need to think very hard about
whether they're the right parent to take care of their child. But I think for,
since it's so common to be opposed to drugs or substances during pregnancy.
I think optimism is justified for most of the situations. - I will say that creating
a family has a workshop for parents. We actually have a workshop for child welfare
professionals as well, a separate one. I can't recommend it highly enough. It is an
interactive participatory workshop. We offer it numerous times a year. You can get
information on our website. I should say it's a workshop for parenting children
who've been exposed to alcohol and drugs, and we cover specific techniques, evidence
-based techniques that work with these kids. Let me just add one more thing, Don, is
that you can go into this with your eyes wide open and be optimistic,
but realistic at the same time. Yeah, exactly. I think that, you know,
saying, Oh, the family and good food is going to take care of all the problems my
child had, which was the mantra maybe 30 years ago is now the, you know,
you're nurturing environment and a good diet goes a long way to make me sure things
are fine. But what you have to be aware of is that there may be issues you have
to deal with. And it's important at very critical points in life, such as,
for going into kindergarten or first grade, to get a full evaluation of your child's
abilities and their needs. So that teachers, psychologists,
et cetera, within the school system or whatever educational system you want to put
them in, are aware of some of the weaknesses that your child may have and can
design a program that will allow your child to become the best possible person that
they can be. And I would add, not only in a school setting, but also in the home
setting, you may need to change the way you are parenting for this child to become
the thrive and grow to their potential. But the good news is that there's lots of
information. Creating a family has tons, and that's what we do. Most of it is how
we can parent kids who've experienced trauma or abuse, neglect, whatever, but there's
lots of other resources available too. So how can parents, adopted parents,
support and advocate for children who are discriminated against due to physical,
cognitive, and other disabilities? Because that's also when you have a child in your
family who has a disability or emotional or behavioral disabilities or behavioral
issues, part of your job as a parent is supporting and advocating for that kid?
Well, exactly. And, you know, parents may think, "Well, I'm just a parent. What am
I going to do to change the school system, to change society, to change how the
government looks at things like this?" Well, let me just put a little history into
this. Back in the '40s and '50s, parents who had children with Down syndrome would
frequently put them with institutional care because there really was no place for
them in society. But because parents banded together and advocated for their kids,
there were two seminal pieces of legislation that came about. One was to make sure
that every child got a free public education that was appropriate for them. And the
other was the American for Disabilities Act, which allowed kids to participate fully
in society. And that was all done because parents of children with disabilities
banded together and made their kids visible. So I think making your child visible to
your school system, to your church, to your community, to whatever, to make them a
human being, to let them know what a wonderful individual they are, that they have
the right to services, that they have a right to have all the experiences that
every other child has is extremely important. So I would say make your child visible
to every area in society and let them know that they're valued and that they are a
full participant in the world as we know it. And I would also throw in that if
you adopt a child with any of the disabilities that we've talked about are any of
the emotional or behavioral challenges that we've talked about. Your job as a parent
is to learn as much as you can about that disability so that you can advocate even
in the medical situation and in the school situations that you're educating. One of
your jobs is to educate the world and sometimes, sadly, even your doctors about what
is best care or what you are reading about what is best care and getting
information, you can't just be passive. No, you can't. And I would add on a
personal note, I have had many a parent of a child with a disability who knew
infinitely more about that condition than I did. And you have an MD and a PhD,
okay? And well to the physician that ignores parents who have spent their life happy
getting for their their kids. Amen.
Okay, we're gonna pause one more time but make sure you stay with us because after
the break we're gonna be doing the rundown of the most common special needs by
placing country, the most common placing countries. But before I do that, let me
tell you about and thank the Jockey Being Family Foundation for their support of
this podcast. Low these many years. Thank you, thank you, thank you, Jockey being
family for that. And it's through their support that we're able to offer you 15
free courses. You can utilize these courses for Continuing Ed if you need Continuing
Ed because you can get a certificate of completion. But even if you don't need
Continuing Ed, these courses are just terrific as far as helping you be just a good
parent. You can find these courses at bit .ly
bfsupport. That's b -i -t dot l -y slash jbfsupport.
And now back to what I promised you, the rundown of the most common special needs.
All right, now we're going to do a rapid fire going through the top placing
countries and having you tell us what are the most common special needs you see
right now coming from those countries. All right, let's start with India.
India by far premature babies or low birth weight babies are among the most common
kids that we see or kids with a variety of congenital malformations.
Okay, and how common is prenatal alcohol or drug exposure? You know, we don't see
it very often. You know, it's almost never a part of the record. We don't see the
facial features of fetal alcohol syndrome very often from India, but we know that
the drinking does happen. And so not all kids with fetal alcohol spectrum disorder
have the facial features. - In fact, most don't, yeah. - Right. - Okay, now Columbia.
- Columbia, we see very complicated family situations, lots of drug abuse and
dysfunctional families for a wide variety of reasons, very, very long detailed social
history for these parents. And also we see kids with extremely complicated medical
issues. Okay, Bulgaria. Bulgaria, I would say the usual spectrum of congenital
malformations. But anywhere in Eastern Europe, we do see a large number of kids that
too have the facial features the cold syndrome or may have any behavioral issues
that we might see. Ukraine, although we're not seeing the numbers come from there
right now, but. Right. But again, I would say the same issues for fetal alcohol
syndrome. Okay. South Korea. South Korea has a very robust medical system that
generally can take very good care of their kids in terms of surgical needs and
things like that. Cognitive disabilities and developmental delays are very, very
common, prematurity, but kind of a popery of, in general,
anomalies too. How common is prenatal alcohol or drug exposure? Well,
we do see it. One of the interesting facts is that as we've gone through the years
of adoption, when we first started, women using alcohol was such a forbidden thing.
We didn't see fetal alcohol syndrome. Now with more common use of alcohol by young
women, we do see more alcohol exposure. We see binge drinking, which is usually
documented. So we do see fetal alcohol syndrome and spectrum disorder in those kids.
Okay. How about Haiti? Haiti is a mess right now.
And The kids, by and large, extreme deprivation and trauma from the environment that
they're living in. We do see both severe and straightforward medical problems simply
because there's no infrastructure to take care of it in Haiti at all.
And last, which is a huge lumping of a large number of countries, but African
countries in general, because I think they have some similarities rather than breaking
them out individually. You know, we see few kids from Africa.
I would say the majority of them are very similar to what we see in other
countries where it's a mix of kids who were abandoned and have been in institutional
care or kids that have various congenital malformations. Alcohol is also commonly used
in Africa, and so that would be a possibility, too. Okay. Well,
thank you so much, Dr. Dana Johnson, for being with us today for a whirlwind tour
of the common special needs in international adoption. We truly appreciate your
expertise and your wisdom. It is so helpful, so thank you. Thank you, Don. It's
been a pleasure.