Which Special Needs?

When you choose to adopt through the China special needs program, you need to decide which special needs you will be open to. Most agencies will present you with a medical needs checklist and you check all the needs that you are open to. The form for my agency has over fifty different medical conditions listed. The conditions range from familiar scary medical diagnoses like Spina Bifidia and HIV+ to unfamiliar yet still scary sounding medical conditions such as Thalassemia or Tetralogy of Fallot. It’s hard to know what to sign up for, and most people are left wondering “What are the easy special needs?” Answering that question can be difficult, because everyone’s idea of what needs are “easy” is different. Here are some ways to find the best special needs fit for your family.

1. What are you familiar with?

Sometimes the best place to start is what you know. If you happen to be a prosthetist then adopting a child with a limb difference is probably the obvious way to go. Many people who decide to adopt a child with Down Syndrome say that they started on that path because they have a close relationship with a friend or relative with Down Syndrome.  Teachers and medical professionals probably have experience with a variety of medical needs, but everyone can ask around among family and friends.

hs5

The Gilbert family became interested in adopting a child with Down Syndrome because of Stephanie’s close relationship with her nephew.  Her husband wrote a great blog post on A Dad’s Perspective on Adopting a Child with Down Syndrome.

Also be sure to watch this great video profile of the Ayers family in Cincinnati, who decided to adopt a child with dwarfism because both parents have osteogenesis perfecta, a type of dwarfism.  Kara’s comments on the discrimination that parents with disabilities face are eye-opening.

2. How is your insurance?

It sounds obvious, but you should check your coverage before you decide which needs you are open to if finances are a concern. If you are open to hearing impairments, will your insurance cover hearing aids or cochlear implants? Speech therapy is often not covered by insurance but children with cleft palate can need extensive speech therapy. How is your out of network coverage if you choose to travel to have your child treated or seen by a specialist? Many states offer services which can help make medical treatment affordable, or make up for insurance coverage gaps.

3. What resources are available in your area?

If you don’t already have a child with special needs, you might not know what the strengths of your geographic area are. Do some asking around to see what is available. If you have a school for the deaf or blind, then you might feel more comfortable adopting a child with those special needs once you see how much they can help you. If you live in Boston which has the premiere pediatric cardiac center then you might feel more confident adopting a child with congenital heart disease. Shriner’s Hospitals provide excellent care for children with cleft lip/cleft palate and orthopaedics. We didn’t realize until after we were matched that there was a Shriner’s Hospital specializing in orthopaedics near us.

Screen Shot 2013-11-17 at 2.56.09 PM

The Olson family has adopted four children with congenital heart disease. Their local hospital has doctors with a lot of experience treating internationally adopted children with complex heart problems.  Their youngest daughter received a heart transplant

4. What sort of time do you have?

You should expect the time immediately after returning home with your child to be full of doctor’s visits and surgeries, therapies, or other procedures. Once that stage is over, how much time do you have available for medical needs? Some special needs require a lot of maintenance with weekly therapy visits, or maybe you expect the child to be in and out of the hospital during times of illness. Other special needs are the sort where you only check in with a doctor once a year or so. How easy is it for you to get time off work? If you have other children, what sort of commitments do you have with them?  Living in a rural area can present unique challenges.  How far away are the medical facilities you’ll be using and how often can you make that drive?  Is there anyone in your area with experience with some of the less common special needs like Thalassemia?

2883

Although we lived in a rural area and already had four children, we found several special needs that we thought would be a good fit for our family.  And we then we found this special little boy!

5. How good is your support system?

Having a good support system can make all the difference in the world. Maybe you already have children, but you live right next door to Grandma and Grandpa who love to babysit. Perhaps you have a church with an active meal ministry. But if both spouses work jobs with little flexibility, or you already have children and no reliable babysitter, then you should be realistic about that when you choose which special needs to be open to.

6. Have an honest conversation about looks.

Many adoptive parents are uncomfortable with visible special needs such as limb differences or dwarfism.  However, children with these special needs might be some of the healthiest and require little in the way of medical care.  Sometimes the visible needs aren’t as visible as you might think.  Can you spot the three children pictured on this page who are wearing a prosthetic leg or two? It is natural to feel a connection with a child who is especially cute, but take some time to consider whether a child with a visible special need might be a good fit for your family.  Once you have a relationship with a child, you don’t see their need no matter how visible it is–you just see your beautiful son or daughter!  I especially recommend you read this wonderful and thought provoking blog post by Elizabeth at Ordinary Time on adopting a child with a facial deformity.

On the other hand, many people are moved to reconsider special needs that they thought they couldn’t manage after being drawn to a child’s picture.  I have heard so many people say “Once we saw that picture, we knew we could handle whatever the need was.  We just knew she/he was our child.”  After having the file reviewed by a doctor and hearing what sort of medical care is necessary, you will probably find it is not as daunting as you thought.

1417534_10200995512197354_1223187083_o

After their youngest biological son was diagnosed with a rare form of dwarfism, the Kreb family went on to adopt three other children with dwarfism and are in the process of bringing home a fourth. Yvette is a wonderful mentor mom to other families considering adopting a child with dwarfism.  

7. Educate yourself about special needs that you are considering, and maybe some of those that you aren’t.

Once you begin to do a little research you may find your perception of a special need isn’t correct. I, like many people, assumed that a cleft palate can be repaired with a single surgery, but it is a special need which is more involved than that, often requiring two or three palate surgeries, lip or nose revision procedures, and speech therapy.  This is still a manageable need for most families, but you don’t want to be surprised by what is involved after you get your child home.

On the other hand, you might more open to reviewing spina bifida files if you learn that in mild cases the child is able to walk.  More people are considering needs such as spina bifida or anal atresia when they learn that people with these issues can achieve social continence through self-cathetarization and a bowel management program. The category of limb differences can be huge, and maybe you would be open to a few missing fingers (or extra ones) but not a child who is missing both arms.  Most children with a particular special need might be more than you think your family could handle, but you could be open to milder cases.

Finally, make sure you aren’t deciding based on an outdated understanding of what a special need involves.  Through medical advances, children with hemophilia can lead active lives.  Drugs are available to strengthen the bones of children with osteogenesis imperfecta (brittle bone disease).  Similarly, through new pharmaceutical advances, children who are HIV positive can live completely normal lives with the viral load at undetectable levels in the bloodstream. (Here is a Facebook group for those considering adopting an HIV+ child from China.)

When considering special needs, I found several of the podcasts from Creating A Family to be helpful:

Should you adopt a child with special needs? (8/13)

Evaluating special needs to see which one is a good fit (12/12)

Health issues to consider when reviewing an adoption referral or potential match (12/09)

Other good resources are the No Hands But Ours blog, where you can get information on various needs and be connected with the blogs of families who have adopted children with those special needs and the Rainbow Kids website.

I found this blog series on adopting a child who is deaf to be particularly informative.

Bethel China is provides an education to orphans in China who are blind.  They have several resources on their website about adopting visually impaired children, and you can also see which children at Bethel are available for adoption.

8. Consider the worst case scenario.

Finally, remember to take the worst case scenario seriously. Files from China are generally accurate, but often minor issues are not disclosed. Sometimes children are misdiagnosed. Heart issues are rather notorious for “minor” being more “major” than was thought.  A few people will find they have adopted a perfectly healthy child while many more will find they are dealing with a need that is far more complex than they thought. If you have a file reviewed by a doctor, it can be easy to focus on the positives, especially if you have already fallen in love with the photo. Be sure to spend some time asking yourselves how your family with cope with the special need being worse then presented, or if the situation turned out to not be correctable, or if the “institutional delays” turned out to be true cognitive delays. There are no guarantees in adoption, any more than there are in life in general. You have to have a certain amount of flexibility and the ability to be comfortable with unknowns.

Along the same lines, it is common to feel guilty about not being open to some needs, or having to decline a referral.  Remember that the best family for a child is one that can meet their needs.  If you know that your family honestly cannot meet their needs, medical or otherwise, then try not to feel guilty about it.  Families will answer all of these questions differently, and a need that is too much for one family will be another families’ “easy special need.”

1273545_161506947381468_1478136437_o

The Greatly Blessed family includes two girls with limb differences, but their son’s special needs were much greater than they anticipated.

9. If you’re looking for an “easy” special need, consider adopting a boy.

Because adoptive parents overwhelmingly prefer girls, many boys who are young and have minor needs wait three times as long to find a family as girls with the same age and need. For this reason, I’ve heard adoption advocates say that the most common special need is being a boy. Take some time to consider how important each of the factors of age, need, and gender are to you.

10. Worrying about “what if?”

I started this post talking about how to find the “easy” special need.  Don’t we all want an easy special need because we’re scared about the how our life could change?  So much of special needs adoption is facing the “what if” and realizing that it doesn’t matter anymore.  What if you take a leap of faith, and you realize the child you adopted is so much more than their special need label?

I think Amy said it best on her recent post on the New Day Foster Home blog:

What if it changes everything?
 
It did. It absolutely changed everything. We didn’t just survive the changes, we thrived.. . . As I look back and remember all of it I’m overwhelmed with thankfulness that  we didn’t let the “what if’s” of fear speak over the “what if’s” of hope. I’m so glad we didn’t miss out on the chance of loving someone deeply whom we’ve never met and making her our daughter. It still blows my mind all that knowing her has added to our life and to our family.
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.
Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s