Let's Talk Special Needs Adoption

I have been mulling over this blog post for a long time because I think it is important to have a discussion about what is considered a special need in international adoption, specifically from Bulgaria. I am going to come right out and tell you that at the end of this post you will not have a definitive answer, but maybe some food for thought instead.

There are many different definitions of special needs. Parents, social workers, placing agencies, foreign partner agencies, and foreign governments all have their own views of what’s considered a special need. While some prospective adoptive parents might list needing glasses or having a food allergy as special needs they would accept or consider, these conditions may not even be on the radar of a foreign government in terms of special needs. On the other hand, being a member of a large, healthy sibling group that must be adopted together might be a special need in the eyes of that same government. A social worker may consider Down Syndrome a significant special need while the family hoping to adopt a child with just that extra chromosome might only think of his or her accompanying heart defect as a special need. A placing agency may tell you that children’s advanced age is sometimes their only special need and a foreign government may refer a child with repaired club feet as healthy.

When I meet new families now who are just starting their Bulgarian adoption journeys, they often tell me that they are open to mild and correctable/moderate special needs. Of course, what this entails for each of these families is hard to know. Our story went like this:

In our very first home study, our approval read as follows, “Craig and Viviane Martini are approved to adopt from Bulgaria one to two children of either gender between the ages of 0-36 months at the time of referral, preferably as young as possible, and in good health relative to orphanage care. The family might consider on a case by case basis a child or children who have some minor correctable needs, such as allergies, missing/fused fingers or toes, cleft lip, and needing glasses.” Looking back on it now, the only thing on this list that the Bulgarian MOJ would probably have considered a note-worthy special need is cleft lip/palate.

Later when we revised our parameters, the home study read, “The Martini family is approved to adopt up to two children of either gender as healthy as possible relative to orphanage care and with minor and correctable medical and emotional needs including, but not limited to, allergies, asthma, cleft lip/palate, club foot/hand, delayed development, diabetes, exzema, fused fingers and toes, Hepatitis A, hearing impairment, hernia, hypospadias, needing glasses, premature or smaller in size, between the ages of 0-36 months at the time of referral with a preference for a child 0-24 months from Bulgaria.”

At that point, MOJ had also created a special needs document we filled out. We said yes to the following conditions: child born of incest, child born of rape, jaundice, umbilical hernia, lactose intolerance, any scars from delivery, Mongolian spots, raised angioma, small nevuses and burn scars, blind in one eye, vision problems correctable with glasses or surgery, cleft lip/palate, ear infections, heart murmur, ASD, VSD, hernia, parasites, missing fingers or toes, webbed fingers or toes, asthma, allergies, bronchitis, pulmonitis, digestion problems, poor nourishment, controlled seizures, hypospadias, and anemia. We also said maybe/would consider to 50 other conditions. Once we had submitted our updated paperwork after a year’s wait, we were matched with Emilia within four months. Emilia has a heart defect (VSD), failure to thrive and significant developmental delays. We did not know until we brought her home that she also has a moderate milk allergy and is anemic. In addition, Emilia has some factors in her family history that could be of concern and might have deterred other families from accepting her referral.

As many of you know, I have the list of registered dossiers through the end of 2009 which at one point was accessible on the MOJ site. This list shows when a dossier was submitted, when registered, the country from which it came, as well as the number and maximum age of child(ren) requested. By my most recent count and unless these families have dropped out of the program, there are still 5 families waiting from 2006, 11 from 2007, and 24 families from 2008. I think it is safe to assume that they have requested fully healthy children who are developmentally on target and that there may even be an ethnic preference expressed in the requests. Unless dropped out, there are 34 families remaining who want to adopt two or more children and 183 families registered in 2009. It’s certain that the greater the number of children and the narrower your age and health parameters, the longer your referral wait.

I have read dozens of reports for kids matched through the main procedure and for waiting children. Some needs that I recall as being most frequently listed: mental illness/retardation in the family, mild/moderate mental delays/retardation in the child, moderate to severe speech delays, congenital diseases that are now cured, heart defects, strabismus, limb differences, hydrocephalus (with or without a shunt), spina bifida, short stature, epilepsy/seizures, premature birth, cerebral palsy, cleft lip/palate, and hearing impairment. Some children are described as having anomalies in the phenotype, but genetic testing came back with no issues. Quite often there are children who are physically healthy but noticeably delayed in development or children developmentally on target with physical disabilities.

So what is a special need? Obviously it depends who you ask, but in my opinion as an adoptive mother who has watched Bulgarian referral statistics very closely for the last two years, it would be foolish to submit a request to MOJ for a toddler with needs like glasses, a missing finger, or lactose intolerance and consider it a special needs adoption. However, a child with a correctable heart defect and developmental delays may be on the special needs radar of MOJ as would any child upward of seven years old. I don’t recommend to anyone that you indicate openness to special needs with which you are not comfortable. However, I do suggest that you educate yourself about what certain special needs might entail. Don’t just read the potentially scary Wikipedia entry, but also try to connect with parents who have children with a particular special need to see what it’s really like. You may be surprised. I also advise that you keep a realistic outlook on the referral wait you might expect, especially if you are just starting out on your adoption journey or are newly registered. Unless the process changes, for a healthy or nearly healthy Bulgarian toddler with few developmental delays, the wait seems to be at least 24 months now, sometimes closer to 36. For children with moderate, correctable or severe special needs and older children, the time to referral seems to be 12 months or less.