If you are considering the adoption of a child with special needs, I am sure that you have many questions you would like answered. Almost twenty-five years of working directly with children with special needs and their families have helped me form the opinion that no absolutes exist when looking for adoption answers regarding this population of children. Over the years, I have been asked questions by families who were considering adoption of children with special needs, families who were in the process of adopting these children and families who were already parenting the special needs child. The answers I found to be as variable as the families and children involved. I began to realize however, that there were guidelines to help families make decisions regarding the addition of a special child to their family. The guidelines tend to differ, however, depending upon the adoption program being considered. The medical expertise, the medical facilities, cultural understanding, capabilities of the overseas agency, expertise of the overseas agency and the expertise of the US agency which is representing the family overseas, all differ greatly from program to program. These are some of the variables which contribute to how questions are answered and what the realistic expectations for that program should be. In the following pages, I have attempted to lay out for you, the potential adoptive parent(s), some issues to reflect upon and guidelines you may find useful.
Choosing An Agency and a Program
The first major step, is to learn as much as possible about the US agency which will represent you overseas. This may or may not be the same agency which is performing your adoption study. When choosing your US agency be prepared to ask informed questions about their international programs in general.
Adopting special needs children, requires more specific information:
Referral Information
Adoptive families often wonder how much information they should expect in a referral of a child from overseas. As child care standards and medical care differs significantly from, country to country and often from program to program within the same country, each program has its own limitations as to the information they provide. Therefore, it is impossible to say what should constitute a realistic expectation. You should assess the standard referral information provided by the program you are considering and if you are comfortable with it, this program may be a good option for you. At this point, I suggest that you talk to other families who have adopted through this program. In talking with these families, you can ask about the information they received, how accurate it turned out to be, and whether they would, with a similar amount of information, proceed with another referral if they chose to adopt again. While their decision may not be your decision, it will give you a better basis for making your own.
Ideally, of course, you would hope to have most of the following information on your infant referral:
Unfortunately, with some programs not all of this information is available. If you feel that some of the above information must be included in your referral for you to proceed with a placement, it will be necessary for you to ask your US agency if your chosen program includes that information.
Information on an older child ideally would include:
Again, I stress that both for infant and older child referrals, you would be fortunate to receive all of the information above, in a majority of the overseas adoption programs.
Seeking Information-an Overview
It is expected that all families who are entering into the adoption of international special needs children have looked at the financial, educational, and insurance aspects of their adoption. Without having each of these areas reconciled before looking at a referral of a child, you are only asking for heartache and frustration. You should know specifically the conditions of your insurance coverage. Does your insurance cover pre-existing conditions of adopted children? Does it cover children from the moment they leave their country of birth? Federal laws exist which say that children placed into a family for the purpose of adoption will be covered from the time of arrival into that family and that pre-existing conditions will be part of that coverage. This must be checked out thoroughly however before you proceed as some state laws have overridden the federal law.
Once you have received a referral of a child from your agency, it is important that this referral is discussed with anyone who will be helping you to make a final decision. At this point there are many options open to you as to how to proceed. You may wish to do any or all of the following to help you gather the information you need to make your decision.
There is sufficient information available on these issues as they relate to adoption and if you cannot locate the resources on your own, ask your agency to suggest literature and/or organizations which can be of help to you. I cannot stress enough the importance of informing yourself about these issues.
Community Information
The first thing you will probably think of doing, is taking your referral do a doctor that you trust. I have found however, that even with someone they trust, families can be frustrated and overwhelmed by their initial contacts with the medical community. It is often difficult for families to know what questions to ask once they meet with their doctor. Families who have the most success in this area are families who have prepared ahead of time and have done their homework regarding the information they have received on the child's referral. If the child who has been referred, has a specific handicapping condition, I suggest that you visit your local library and/or contact the appropriate organization, to inform yourself about that condition. The information you accumulate within the first few days of doing this "homework" may be startling. Remember, that there are varying degrees of severity which appear for different diagnoses. What is encompassed under one label can range from mild to severe and, before panic sets in, a clear picture of where the child you are considering fits in that continuum is important. This time spent information gathering, will better prepare you to discuss the child's prognosis with your doctor as she/he explains how the diagnosis affects this particular child.
Involvement with parent groups that meet to discuss the concerns of children similar to the child whose referral you are holding, is very important. This will help you immensely in putting the medical information into perspective by learning about the day to day lives of these children. You can locate these organizations by contacting the Department of Health and Human services at the National Institutes of Health at 1-800- 358-9295 or the National Health Information Center at 1-800 336-4797. These centers can give you the number for the national organization specific to your needs and the national organization can put you in contact with your local chapter. Other parents are another excellent way to begin your search for information. Parents both by birth and by adoption offer their support in a non-threatening environment. Through these conversations, you will be receiving a great deal of new information and it is an emotional time. Please reflect upon what you have heard and learned before you make any final decisions. Don't be surprised if, at first, it is easier for you to ask questions and express fears with people who have experienced your concerns, than it is with your social worker. Following your discussions with other parents however, you will probably feel more comfortable expressing your thoughts with your worker.
Medical Resources There are many questions that the doctor may want to ask you, and there are many questions you will wish to ask the doctor. Before you get to these however, I feel that it is imperative that from the outset you make it clear to your doctor that you have already made the decision to proceed with an international adoption, that you have already made the decision to accept the referral of a special needs child, and that what you want from this doctor is the information and guidance she/he would give to any family who entered the office with their birth child, asking the same types of questions. Explain to the doctor you understand that she/he is not making the decision for you, she/he is only helping you to become informed. Explain that you are not asking whether or not you should proceed with that child. REMEMBER, THE DECISION TO PROCEED OR NOT TO PROCEED WITH A CHILD REFERRAL IS A DECISION ONLY YOU CAN MAKE.
Many people are angry or frustrated when the doctor they consult does not give them definitive answers. Please understand, that the medical doctor who is giving information on a child from another country is put into a precarious position. First of all, the doctor you are consulting obviously has not made the original diagnosis, and is being asked to give opinions on someone else's expertise. This doctor does not usually know specifically how this child was diagnosed, what tests were given to reach the diagnosis, what equipment was used for these tests, whether the x-rays, EKG's, echoes, sonograms, or EEG's were interpreted accurately, whether the blood chemistry was examined accurately, and whether there are genetic or chromosomal factors which may play a part in this child's diagnosis. Furthermore, your consulting physician may not be able to determine who specifically diagnosed this child, if that person was a specialist in the area of this child's particular medical concerns, how accurate the original physician's previous diagnoses of this type have been and if the diagnosis has lost something in the translation from their language to English. Certainly, this all explains that there are hazards to interpretations of test results or readings by another doctor. As a result your consulting doctor is likely to qualify her/his statements regarding this child and the child's present and future situation.
This does not only hold true for specific tests results, but also for therapeutic evaluations. An example of this comes from Korea, which provides adoptors with some of the best and most accurate medical information on international children available for adoption. The therapeutic workup which a family receives is often done on a system known as Voijta. This system is used in Korea, other Asian countries and parts of Europe. However, it is frequently unfamiliar to those in the United States. The Voijta system of diagnosing children who have some neurological concerns is based on what they call, CCD, or Central Coordination Difficulties. These run mild, moderate and severe. Often in the United States, however, these diagnostic criteria are interpreted by families, social workers and physicians alike as equivalent to the diagnosis of mild, moderate or severe cerebral palsy. Cerebral palsy and CCD are not necessarily synonymous. The example of Voijta is only one example of the confusion which can occur in medical communities from cultures to culture.
Second Opinion? The question of seeking a second opinion is often raised by families who are adopting children with special needs. It is my opinion that, if you are considering adding a child with a medical concern, you should check with more than one physician. Medicine is not an exact science and there are usually many different opinions on any one issue, especially when that issue is seen infrequently in the United States. I suggest that you ask the physician you are consulting, if they have had professional experience with children from other countries or cultures. I would also suggest that you ask if this diagnosis is common or uncommon to this child's country of birth. There are many reasons for families to seek second or even third opinions from the medical community. Often, the family doctor you contact is only able to provide you with a broad outline of the specific medical concern you are interested in. That doctor may refer you to a specialist in this particular child's disability. At other times, members of the community, parent group members, or other adoptive parents may suggest a doctor that they found to be extremely helpful. You may also find that following your initial medical contacts, although you are not ready to give up and say no, you are also not ready to continue without receiving an additional opinion. Some families even seek a second opinion when they feel the need to have a positive first opinion corroborated. I have also encountered families who, although they have received quite negative evaluations, feel that no matter what they hear, the referral they are now holding is information on "their" child. These families seek second opinions to find a medical provider in their community who they feel can provide their future child with the best available treatment.
You may find that as you talk to a variety of medical people, you will come to realize that diverse philosophies and treatments for the same condition in the same community can exist. Before making your final decision, it is important for you to take all of the information you have received from the specialists and decide how much, if any, of this information contains adoption bias by the doctor who was answering your questions. Remember that physicians can hold the same prejudices against foreign and special needs children that others in the community hold. International adoption is NOT without controversy.
Requests For Additional Information Frequently, the medical personnel consulted request further information regarding the child's medical condition. In some programs, this would just not be possible and in those instances you will need to make a final decision with the information you already have. Often, the tests or information which have been requested are either not within the capabilities of the medical or social work staff of the country where the child is presently living, or test facilities and/or equipment are unavailable You will need to ask the advice of your agency as to whether the information requested is appropriate and realistic for your particular program. It is your right to request any and all information you feel you may need in order to make a decision regarding a particular referral. It is the agency's responsibility to be knowledgeable regarding the international agency's attitudes towards requests for more medical information. You and your agency must be aware of the sensitivities of the country from which the referral was sent, and how this request will be received.
Requests for information will lead to delays and everyone involved needs to discuss and decide why the information you are requesting is important to you. You, your social worker, and your physician need to carefully scrutinize the information being requested. Why is this information needed? Is the information being requested to aid in treatment upon arrival or is it being requested in order that a decision may be made? Questions you need to ask of yourself regarding your request are: What are you going to do with the information when and if you get it? How will it make a difference to your decision regarding this particular child? Can you set a time limit where, if no information is received, you will make a decision without it? You need to decide beforehand, what your decision will be if given positive or negative information, or if no new information is received.
It is important to remember that time is of the essence when considering the referral of a child. While you need to gather as much information as it is possible to accumulate in order to make an informed and caring decision, it is also important at the same time to remember that, as long as you hold this child's information, that child remains a waiting child. The special needs children in other countries have often waited too long already. Even if you cannot handle, and are not ready to accept, the medical concerns of the child being referred, this child may be perfect for another family. This is not to say that the request for additional information is inappropriate. In many cases, this information is not only appropriate, but is often appreciated by the overseas agency who will have an opportunity to learn more about this child and other children with similar medical concerns. At the same time, indecision might hold up or take away an opportunity for the child's placement or referral to another family, so when you make that request, do so, with serious intent on proceeding.
Decision Making Can you truthfully say that you have looked at all your concerns objectively? You may still be concerned about some issues, but do you feel deep down that this is the right decision? This is the time to question your choice. Can you live with the ongoing hours of care this child will need? Are you proceeding because you pity the child? If so, can you overcome the pity?
If the unanswered questions at this point are extremely disturbing, this may not be the right child for you. It is wonderful to believe that the child who has not thrived in his or her homeland will respond to your love and attention. This has proved to be true in many cases, but not all of them. Realistic expectations are a must, because unfortunately, LOVE DOES NOT CONQUER ALL!!!
A failure-to-thrive or institutionalized child, a developmentally delayed child, or a child with a parental history of substance abuse, may not respond, catch up and accomplish the dreams you have envisioned. That child may always remain delayed or unstable. There are many children and families in the United States who have always received love and yet never measure up to America's mainstream. This is a fact that needs to be part of your decision. So many people can spend long hours, days or months working with a child when they feel the outcome will be a positive one. Can you still feel that child is a part of you, if the outcome is not as positive as you had hoped?
These problems do not only apply to the non-thriving infant or young child. Some of the older children who are placed for adoption are not and can never be like most of their peers. There has been a great deal written about the child from another culture, but have you thought about the far-reaching aspects this can have for you personally? The attitudes, feelings and outlook on life we take for granted can often be totally and literally foreign to a new child for many years to come. If you are bringing an older, handicapped child into your home, you may be surprised that your child looks down upon other handicapped people. In some cultures, differences are not acceptable to the majority. These children, despite there own physical conditions, are often products of those feelings. This may also be an indication of how they feel about their own self-worth. Patience and understanding are crucial in such situations.
A wonderful aid in decision making, is to spend some time with children who have similar physical challenges to the child you have on referral. Visit the child at their home or school, if possible. If you see no problem accepting what you observe at this point, project some of your fantasies to the teen years, or visit with a teen and their parents. Are you still comfortable? All of us have images of ourselves that we hope are true. We look at children and families that have "made it" and we say we can do that too. We want to see ourselves as strong enough and capable enough to endure whatever challenges life presents. Be sure that you are being realistic regarding your strengths and weaknesses.
We also, have expectations and fantasies for our children. Unfortunately, these expectations cannot always be fulfilled. The reality of the situation becomes all too clear after the fact, so it's best to examine ourselves beforehand whenever possible. There are no guarantees in life as to the future of any child, whether that child is brought into the family by adoption or by birth. You must feel comfortable proceeding with your adoption plans. It is imperative that you remember that adoption, like birth, is a lifetime commitment.
Using the information available to you, you need to look at the best and worst scenarios. Whether this information is complete or whether it is limited, you must consider how the information differs from what you expected or hoped to receive. You must then decide if you are comfortable with the information you have received, and whether given the worst scenario, you feel strong enough to be able to cope with whatever is ahead of you.
While You Wait Some cities have set up international adoption medical clinics which will not only evaluate the children who are entering or have arrived into their own community, but will also be open and available to phone calls from families or physicians, country-wide. If you wish to know how to contact these clinics, you can ask your agency, your physician, your local adoption support group or Adoptive Families of America. Take this waiting time to contact the clinics, find out what they suggest as far as initial medical and follow-up visits and be ready with this information when you take your child to his/her initial medical check with your chosen medical provider.
You will also need to look into the special education and early childhood special education programs available in your area. You need to know how soon after arrival your child will be covered by the educational system and if these programs will be adequate for your child. I suggest that, if you know that the child you are considering will need special educational services, that this is the time you contact the program's director and make an appointment to visit the school or center where the program is held. You may also be entitled to in-home services and that too should be investigated. It is important to know your rights under the law for services provided to your child, if such services are necessary. You need to know the facilities available and the proximity of these facilities to your home. Will busing be provided for the child? Will services for the school aged child be provided within the regular school setting? Each family has the obligation to seek out answers and ask any questions which might make your lives and the life of the child you are adopting more comfortable and less stressful.
Summary I have worked with over 1000 children with special needs and their adoptive families during my career. I have occasionally seen families experience heartache, disruption and divorce. Some of these families feel that the major stress in their lives began with the addition of their child with special needs. The majority of families however, feel that the addition of their child with special needs was one of the greatest experiences of their lives. Much of what I have written here may appear to be disheartening and pessimistic. I truly don't mean it to be that. The point I am trying to get across, more than any other, is that adding a child with special needs to your family requires realistic and objective decision making . There is no parenting that is easy and without problems. The addition of a child with special needs can enhance the difficulties and the problems faced in parenting, but done correctly, it can also be a joyous experience. AN INFORMED DECISION CAN MAKE THE DIFFICULT TIMES EASIER TO MANAGE AND BE THE MOST REWARDING AND FULFILLING DECISION IN THE LIVES OF BOTH YOU AND YOUR NEW CHILD.
Any thoughts or comments on this article would be appreciated: Americans for International Aid and Adoption 3080 Shields Dr. #101 Eagan, Minnesota 55121 (612) 687-0259 Phone (612) 688-6639 FAX email: AIAATERI@aol.com
Teri Bell is a licensed social worker who holds a masters degree in Early Childhood Special Education and has worked internationally for the adoption of special needs children for over twenty years.
