More considerations when choosing special needs

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Categorizing the special needs

This post is a continuation of my post Which Special Needs? which discussed choosing which  special needs are a good fit for your family.  Now that you’ve taken some time to consider what resources you have in your area, what sort of time commitment you have, and other practical factors let’s look at some other considerations.  

For the majority of people, the question might be “What are the easiest needs?”  However, other people might want to adopt a child who is considered difficult to place so they might be asking “Which are the needs which few people are willing to accept?”  Here are a few different ways of categorizing the special needs which are found in files:

What are the most common needs people are open to when they are looking for a child with minor needs?

  • Minor and correctable heart conditions
  • Cleft lip and cleft palate
  • Club feet
  • Birthmarks
  • Treated congenital syphilis
  • Missing or extra digits

These represent special needs which are correctable, do not affect intellect or mobility, and are generally less visible once corrected.

What are the most common special needs in the files made available for adoption?

  • Cerebral palsy
  • Heart conditions
  • Down syndrome
  • Hydrocephalus
  • Cleft lip/cleft palate
  • Limb differences
  • Spina bifida
  • Anal atresia

This list is pretty much a list of the most common birth defects in any human population with the exception of anal atresia which has a higher incidence in China than in the US.

What special needs do the children have who are most difficult to place?

  • Being a boy
  • Any intellectual/cognitive delay
  • Urinary or bowel incontinence
  • Uses a wheelchair
  • An identified syndrome
  • Visual impairment
  • Disordered Sexual Development (genital malformation or intersex disorder)
  • HIV+
  • Cancer, or a history of cancer, such as retinoblastoma

Other than being a boy, these are all things that cause people to go “I just couldn’t handle that!”  We will discuss some of these needs later on because often they are not so scary if you have a better understanding of what is involved in the need.

Which special needs are matched fairly quickly for girls but cause boys to wait for families?

  • Albinism
  • Giant congenital nevus
  • Dwarfism
  • Ichthyosis
  • Microtia
  • Deafness
  • Age*

Girls with these needs are so easily matched that their files are often labeled LID only if they are young.  What is interesting about this collection of needs is that with the exception of deafness they are all visible needs.  In some ways you might expect this to have a greater impact on girls than boys.  Perhaps similar to the impulse people feel to adopt “unwanted” girls as a way to show that they have value, people also decide to adopt a girl with a visible special need because they want to teach her that she is beautiful in her own way as a reaction against a society which prizes beauty in girls.  

*Older girls are not matched quickly in the way that young girls with the medical needs listed are.  However, it is substantially more difficult to find a family for an older boy than an older girl. There are twice as many boys as there are girls over age 10 on the shared list.

Which special needs will lead to a shortened life expectancy due to the limitations of health care available in an orphanage if the child is not adopted?

  • Cancer
  • HIV+
  • Thalassemia
  • Congenital heart conditions
  • Hemophilia
  • Spina bifida

These conditions really have nothing in common.  Children sometimes receive heart surgery or chemotherapy in China, but the quality of medical care is usually much better in the US.  However, congenital heart conditions and cancer are still potentially lethal for the children even if they are adopted and receive the best treatment available.  

Chronic blood shortages mean that children with Thalassemia are not infused as often as needed causing their life expectancy to be only age 10 in China, while they are expected to live normal lives in the US.  The clotting factor given to people with hemophilia in the US is not available in China, so the life expectancy of a hemophiliac there is only to age 24.  

Children with spina bifida or other diagnoses which can cause incontinence who are in orphanage care in China are often left in diapers rather than using a catheterization routine.  This can lead to routine bladder infections and over time cause the kidneys to stop functioning.

China has a strong stigma against HIV+ individuals.  Medication may not be as readily available and HIV+ individuals, even children, are often turned out of hospitals when they are ill because of their status.   While the long term life expectancy of children living in the US who are HIV+ is uncertain due to how recent the medical advances have been, those whose viral load remains at the “undetectable” level is currently assumed to be the same as the general population.

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What parents want you to know

This final section should not be considered medical advice.  Rather, I’m going to pass along some information shared by parents of children who have some of those “I could never do that” special needs.  These are the needs that I often hear people saying “I never considered this need but there is a child I am drawn to who has it.  Can you tell me what daily life looks like?” If this information helps you to think a need might be a possibility for you, I would encourage you to do more research.

Blindness/Vision Impairment– More people are open to albinism as a special need than to other vision impairments, which is a confusing phenomenon when you consider that most people with albinism are legally blind.  So many parents find any special need associated with vision to be very scary because they can’t imagine what their own life would be like without sight.  What parents who have adopted visually impaired children want you to know is that they find it so easy, they feel it really shouldn’t be a special need at all!  These kids compensate in so many other ways for their loss of vision.  Most attend public schools and will grow up to marry and lead productive lives.  I had a friend in high school who was blind.  He taught me to play chess, was the marching band drum major, walked across four lanes of traffic every day to take calculus at the university near our high school, and is now a professor of music.  However, children with VI who are adopted from China will need time and therapy to overcome the delays they experience due to caregivers who don’t understand how to give them the non-visual stimulation they need to grow and develop.

Deafness– Surprisingly, what I heard from parents who have adopted children with this special need was kind of the opposite than that of blindness.  Parents want you to know that the communication is a greater challenge than they expected, but it is worth the effort.  It is vital that you have access to resources to learn ASL, something you should begin doing before you even meet your child, because they will soon surpass you.  Ideally, your entire family would sign all the time, even conversations which don’t include your deaf child. Being unable to take part in routine conversation, even indirectly, will over time cause your child to feel excluded.  While hearing aids and cochlear implants are helping children to hear, they sometimes fail so having the ability to sign will insure that he or she always has a way to communicate.  Finally, be aware that there is a deaf subculture and topics such as whether or not to implant children, or send them to a school for the deaf versus mainstream education are all very loaded topics.  As with any special need, it will be up to you to educate yourself and be your child’s advocate.

Disordered Sexual Development– This is a very large category of special needs which means that there is an abnormality in the systems which affect a child’s sexual development.  Some of these children have hormonal abnormalities such as with Congenital Adrenal Hyperplasia (CAH) while others might have physically ambiguous genitalia, often labeled by the antiquated term “hermaphrodite” in Chinese files.  These files will often be listed as “sensitive special need” on advocacy photolistings.  Parents who have adopted children with these special needs want you to know that these kids are healthy and normal!  Their greatest need is for a loving family who will support them as they develop a sexual identity as male or female, protect their privacy, and help them to navigate peer and romantic relationships as they grow.  Being within travel distance of a specialized DSD clinic is important to make sure your child is getting the most modern treatment options.  Be aware that surgery to assign a gender to a child at a young age is not medically necessary.  The current recommendation is to wait on surgery until the child is old enough to want it, and many adults with DSD have chosen not to have surgery at all because they are happy with their bodies intact.

HIV+– Parents want you to know that dealing with people’s ignorance is the greatest challenge about adopting a child who is HIV+.  Thanks to new medications, the virus can reach levels so low that they are “undetectable” in a blood test.  This means that as long as they are taking their medication twice a day (sometimes dropping to once a day after age 12) they can expect to have a normal life expectancy.  Many HIV positive adults are married and have biological children with an HIV negative spouse.  Insurance companies will pay for the medication and there are many programs available which will even cover the cost of the copayment.  Most families pay only $30-$60 per month for their medication.  China currently considers HIV+ children to be unadoptable so few files are made available.  This will change if more families request HIV+ children, so let your agency know if you are open to this need.  Be aware that most of the  HIV+ kids available for adoption are usually older and have come into care after the death of their parents.  These files will often be listed as “sensitive special need” on advocacy photolistings.

Hydrocephalus– This diagnosis literally means “water on the brain” and it is a condition in which there is excessive fluid in the brain.  It is sometimes the result of brain damage or occurs in conjunction with spina bifida.  Hydrocephalus is most commonly treated by a surgical procedure to shunt the excess fluid away from the brain.  Hydrocephalus can cause brain damage if left untreated but it is typically not a condition which affects intelligence.  Parents of children with hydrocephalus find this condition to be very manageable.

Incontinence– Parents want you to know that yes, you will deal with pee and poop.  However, this doesn’t mean your child will be attending prom in diapers!  There are many modern medical advances which make it possible for people with incontinence to achieve “social continence” which means that they wear normal underwear.  Urinary incontinence is usually managed through a catheterization routine.  Children are able to self-cath by age 8 and sometimes younger with girls usually becoming independent before boys.  Bowel management can mean routine enemas or surgical methods which ease the process.  Social continence isn’t achieved instantly, so you should have a flexible attitude and a good sense of humor as you work with your child’s doctor to find the management system which works best with your child. 

Spina bifida– This is a very common birth defect with a wide variation.  The most common associated conditions would be reduced mobility, incontinence, and hydrocephalus. Please refer to the entries related to those conditions. Club feet is another associated condition, so if you are open to club feet as a need you might want to research spina bifida as well because you could learn once your child is home that they actually have a mild form of spina bifida.   Children with spina bifida are intelligent and grow up to live independent and productive lives.

Wheelchairs– Parents want you to know that children are not “limited” by a wheelchair.  It gives the child mobility that they are lacking!  If you are adopting a younger child then you probably do not need a special house or van, although many parents find these helpful once the child is too heavy to lift.  Depending on their special need, your child can probably get him or herself up and down stairs, into a vehicle, in and out of their wheelchair, and live a fully independent life as an adult.  Most parents say the most difficult aspect is visiting private homes which do not have a wheelchair ramp to enter, but portable ramps can be purchased to take along when you visit friends and relatives.

Many parents begin their journey into the world of special need adoption tentatively, and asking “what are the easiest needs?”  However, my hope is that this post will cause you to consider the many children who are waiting because of their particular special need.  You might be scared about a need being too difficult for you, but also consider how much more difficult life will be for that child without what they need most–a loving and supportive family.  For more information on these or any special needs, please join the Special Needs Resources group on Facebook.

 

 

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.

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2 thoughts on “More considerations when choosing special needs

  1. Karen Pugh

    I loved your article ! I would add Spina bifida and severe scoliosis to your list of conditions that would cause children to have a decreased life span if they stay in China. Non optimal treatment for SB can cause more paralysis , kidney failure, etc. Severe scoliosis can cause breathing difficulties and mobility issues.

    Reply
  2. Melanie

    The “deafness” category is spot on. We are a deaf family with both hearing and deaf children. I always cringe when I see deafness as listed as minor need. Language is what creates relationship and it is important for every person in the family to be able to communicate with the child. Especially the siblings. If you talk with Deaf adults, they always emphasize how left out of their family they felt and had zero relationships with their brothers and sisters. While we haven’t adopted yet, I think it is a good idea for parents to really consider the implications to the whole family. Often initially siblings will enjoy learning sign but once the novelty wears off, will not make the effort to really involve their deaf sibling.

    Reply

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