Becoming Your Child s Best Advocate: Help for Adoptive Parents Adoption Stories EDUCATIONAL Failing to Advocate In retrospect we probably didn't advocate strongly enough for our son, Trevor. He had behavior problems from the beginning, in kindergarten. He found school frustrating and would act out in class. We did try and get an IEP for him, but the school consistently discouraged us. They told us that Trevor wasn't qualified because he was too bright, that it was a waste of time for us to even go through the process, and that they really had nothing to offer him. Of course, that didn't put a stop to Trevor's problems at school. I wish we had pushed harder to get some kind of intervention when he was younger. I think it would have made a difference in how Trevor perceived school. He might have found more success there. Private School Because the public schools seemed to be failing Trevor, in sixth grade we enrolled him in a private school. Socially it was a great experience for Trevor, but academically it was a disaster. It was quite a challenging school with very high expectations. Trevor worked hard, but he had a strong fear of failure, and often lost or failed to turn in his homework. We tried talking to the school, and asked that they let us know when he didn't turn in assignments. They refused, saying that we were "enabling" Trevor. In the end, the school asked Trevor not to return because of his poor performance. What We Wish We'd Done If I had it to do over again, I'd be much more persistent with the school and the teachers. I'd do more research on children's rights and the range of services the district could have offered. I think a lot of our problems were due to ignorance. We didn't know what to ask for, or what our options were. Trevor probably has learning disabilities that they could have tested him for, if we'd indicated some of his problems more specifically. They may have been able to provide different strategies to keep his attention in class.
Behavior Problems as an Excuse Trevor came to us with emotional problems. He'd been neglected by his birth parents and had been in two different foster homes. He almost certainly had attachment issues which we didn't know about until much, much later. We always told the school something about his background, and the kind of troubles that he'd had. We wanted them to understand Trevor so they could work with us to help him. Instead, it often felt like the school thought that we were trying to use Trevor's emotional problems as an excuse for his bad behavior. They didn't seem to think that Trevor's emotional problems had anything to do with his school problems. They were concerned with how he acted in school, not with the reasons behind his actions. I really feel that in many ways the schools failed Trevor because they refused to see him as a whole person. Early Intervention I got very lucky about early intervention. I met someone whose son had a similar condition's to Calvin's, and she mentioned that her son was in an early intervention program through the school district. I contacted our school district and was delighted to discover the kinds of programs they offered. I'm sure it made a big difference to Calvin's development to be able to go every week and have someone work with him. I'm so grateful I met that woman; because I'm not sure I would have found it otherwise. Who Attends an IEP Meeting The first thing I do before an IEP meeting is to make sure that everyone I want to be there gets invited. I send a letter to the district secretary who schedules the meeting, and I indicate exactly who I want to be there. I always have the classroom teacher, the physical and speech therapists, and the school social worker. This year I also insisted on the director of pupil services from the school district because I wanted to address an issue which concerned the district and not just the school. It was difficult to schedule such a large group, but I insisted that no meeting be set unless everyone could be there. I also insisted it be at a time when it was convenient for me. My son's IEP was fifteen pages last year. This is not something that I can give less than my full attention. I had to be firm, but I was determined that this be done right. My husband always attends with me. We want to be sure that we both hear the same things and the school knows we are both concerned. In the future I want Calvin's older siblings to attend, because they are the ones who will have to care for him if anything happens to us. They need to understand the process, so they can effectively advocate for him if need be.
Getting the Most from the IEP I don't take notes when I attend an IEP meeting, because I want to be sure I hear everything that is being said. Instead I tape record the meeting and write up my notes later. And I never sign anything at the end of the meeting. I made that mistake once, and will never do it again. It may seem like they are trying to save you time by telling you that they'll fill it in later. But you need to see exactly what the IEP says before you sign it. I insist that everyone who is going to deal with my son be at his IEP meeting for several reasons. First, I need to hear what they have to say about his progress, and what his goals should be. Second, I need to be able to negotiate with them for anything I think he should have. If I think my son needs an extra 30 minutes a week of physical therapy, I don't want to be told, "We can't do that, the therapist doesn't have time," I want to negotiate with the therapist directly. Social Worker at IEP Meetings As a social worker for the school district, I see my role at IEP meetings as bringing the family perspective to the table. All around the table are specialists who only know the child in one context, in the school setting. I have an understanding of who the child is outside of school, how the parents see the child, and what I've observed about the child. Often parents are intimidated by the whole process. I can speak for them and make sure that the IEP addresses their issues, and that they don't bring in information that is irrelevant to the process. Bring Support to the IEP Meeting I always encourage both of the child's parents to come to an IEP meeting. Many mothers feel very alone in the process, particularly when they have to go home from a meeting and explain to a spouse what happened, and the spouse questions them or second-guesses them. Also, it always helps to have another set of ears to hear what goes on, as a reality check. If a parent can't take the time off work to come, bringing the child's aunt or uncle or grandparent can provide that second set of ears. If there is a significant caregiver for the child, that person can also provide a valuable perspective on the child and his care. IEP Concerns Parents should not sign an IEP unless they are comfortable about what it contains. If there is anything in the IEP that they don't understand, or they have a problem with, they should ask for an explanation. Also, the parent can also request that the IEP team reconvene, if they have concerns about something. Parents do not have to wait until the school district determines that it is time for a meeting. They can request a meeting whenever they think one is warranted.
CHILD S HISTORY Know Your Child's History If you have a good caseworker, she should be able to get you as much information as she can about your child's history, and help you understand the issues your child faces. A good caseworker should be able to point you to resources that can help your child and your family. In our case, we knew some of the circumstances of early care and his neglect. We didn't have very much information about either of his birth parents, and no medical history for either of them. We went through the Midwest Adoption Center to try and get in touch with the birth mother, so we could at least get some medical background, but she never responded. STRATEGIES Hot Coals I would walk over hot coals if I thought it would help my son. Absolutely, no question. I'll do whatever it takes. This is why I keep reading, and keep learning, and keep asking for whatever help I can. Document Everything The best strategy I can suggest to parents is to keep records of everything. You should always take notes of what was said, if only so you can refer to them later. You think you'll remember things, but often you don't. Some people suggest writing a note summarizing what occurred in a meeting and sending it to all the participants. I don't know if that is necessary, but it certainly can be useful on some occasions, particularly when you want to hold someone accountable for what they said they would do. I do use letters, rather than phone calls, to ask for things. When it is in writing people tend to take it more seriously. Support Groups Finding a support group was the best thing that ever happened to be when dealing with a special needs child. I just don't know what I would have done without them. It is like its own little world, where we all speak the same language, and share things that no one else understands. And everything that we say in the room stays in the room. We don't talk about each other's problems outside. I've learned so much from them. One woman, who I thought was really quiet and passive, told a story about how she heard a teacher's aide put down her daughter. The mother immediately called the school district and insisted that the aide never again be placed with her daughter. I was so shocked! Not only would I never have thought to do that myself, but I never would have expected her to be so assertive. I told her, "Good for you!"
MEDICAL AND MENTAL HEALTH Finding the Right Therapist We sent Trevor to a therapist shortly after he joined our family, when he was four. He had a lot of tantrums, and just seemed to have a hard time becoming part of our family routine. It took us three therapists and many years before we found one who really seemed to understand Trevor's problems, and who had an approach that worked for all of us. The therapist we finally found had lots of experience with adoption and attachment, and he understood the attachment problems that Trevor had. His approach was more family-oriented, rather than just treating Trevor individually. It proved to us just how important it is to get a therapist who understands about adoption and attachment and childhood trauma. It also made a big difference for us to be involved in the therapy. I think we could have helped Trevor a lot more when he was younger, if we'd been more involved with his therapy. Finding the Right Doctor When you have a child with special needs finding a doctor you can work with is very important. We were very lucky to find our pediatrician, who is young and open to new ideas. She listens to what I have to say, and she doesn't rush me, which is very important to me. She doesn't get offended if I bring in information I've found elsewhere, or if I make a suggestion. I particularly appreciate the fact that she doesn't pretend to know everything. If she has a question about something, she looks it up herself. Working with Difficult Professionals Ideally, you try to find a doctor or therapist who you find easy to work with, but unfortunately, it's not always possible. I'm always very careful not to mention alternative therapies to our neurologist, because I know he won't be receptive to them. He likes what he considers the "tried and true," and is very suspicious of anything new and different. I've also had experience with doctors who get very offended they think you are second-guessing them, or even if you have done any outside research. I've learned to choose my words carefully, and not refer specifically to what I've read, so they don't feel I doubt them in any way. Labels I hate having to put labels on my son. One of the worst aspects of parenting a special needs kid is that you are constantly forced into these labels. I think the labels often equal limits. If you say, "My child has X," people instantly assume certain things about your child. And you certainly don't want to say these things around your child, because you don't want them to associate themselves with these labels and limitations. But I've found that no one will take you seriously unless you use them. When you apply for services, the services are based on a diagnosis. Often a specific diagnosis is needed in order to get certain services. The "wrong" diagnosis" can mean no services will be provided.
Diagnosis When Calvin was born we knew something was wrong but we didn't know what. The pediatrician we had at the time wouldn't put a label on it, and didn't think it was necessary for him to see a specialist. It wasn't until he was 18-months old and we saw a neurologist that we got a diagnosis. Then we were asked to wait, and they sent in a social worker to talk to us about what we needed to do. She talked and talked, but I didn't take anything in. It's really difficult to concentrate on next steps when you're still trying to get your brain around what is wrong with your child. We really needed to go home and have some time to ourselves, and then talk to the social worker. We would have gotten a lot more out of the whole experience. LEGAL Advocating within the Legal System When Trevor was fifteen he got in trouble with the law and that's when things really began to go wrong with school. He began attending school less and less, and began hanging out with another kid, and the two of them began burglarizing homes. They got caught. Trevor was very smooth, very manipulative with the probation officer, and was very open and honest in admitting what he'd done. This impressed the probation officer, who said, "Fine. We won't put you in a detention facility now, but you have to go to school every day, be in before curfew, or we'll put you in a county facility." Trevor turned around and violated everything. He didn't go to school, he broke curfew, and he was caught shoplifting. But the probation officer refused to do anything. We demanded accountability. We insisted that the only way to teach Trevor the consequences of his actions was to follow through with the threat, and put him in detention. We had to be assertive and insist on this, because we were afraid of what would happen if he was allowed to slide. What would happen when he was an adult? He's serving five months now. FINANCIAL Finding Funding for Services Getting the right kind of care for a child with special needs sometimes makes me feel like an acrobat. I spend my life jumping through different hoops. For example, our state had a program that funded different types of devices, therapies and care that Calvin could use. The state had a rigid set of rules for who was eligible. To prove your eligibility you had to prove your insurance company would not cover the service, that you were not eligible for welfare (which meant filling in those forms, attending an interview, and getting formally rejected, so you could submit that rejection with your application), and that you had a condition that was covered. We did all of it, including getting a diagnosis that was not entirely accurate from our neurologist, so we could qualify for this program. Then the state cut funding for that program and we were cut off. So it's back to square one.
Financial Advocacy As a parent, it is important to have your financial affairs in order so that your family is provided for in case something was to happen to you. As the parent of a special needs child, it is doubly important and far more complicated. First, you need to consider your child's financial needs not until he is 18 or 21 but until his death. And that could be long after your own death. Second, if you are fortunate enough to have a great deal of money, leaving it to your child outright might be the worst thing you could do! There are all sorts of financial restrictions for some programs and services. I found a trust attorney who specializes in setting up trusts for children with special needs. He was able to establish legal and financial controls that would allow us to provide for our son after we are gone but still allow for Social Security benefits. I highly recommend seeking such a specialist.