“I wish the system didn’t force me to be mean.” Jyl, the mom of a child with special needs, is in anguish. Not only is she managing her challenged – and challenging – child, she’s found herself in a painful struggle with the local school system. “I tried to be nice. I tried to work with them. But it seems that it is only when I get demanding that my son gets what he needs,” she says. “I know times are tough. I know services are expensive. But if I don’t go to the mat for my child, who will? Now I’m getting a reputation for being “difficult” when I’m only trying to get him some help.”
There’s no getting around it: Special supports for kids with special needs are expensive. When schools are facing budget cuts, providing specialized services for one child may mean larger class sizes or the loss of a sports or music program for everyone. It makes sense that school administrators are sometimes reluctant to acknowledge just how challenging a particular child may be.
On the other hand, some parents’ idea of “reasonable accommodation” is an unreasonable amount of resourcing for their child at the expense of the larger community of the school. Even entirely reasonable parents find themselves having to push hard for services. When the price of everything is going up, a family’s very reasonable requests are sometimes beyond what a school can reasonably do. The end result is that the parents and school personnel who should be working on the same team to meet the needs of a child find themselves in a tense and sometimes even adversarial situation.
My client Jyl finds herself in such a place. She sees the school as unresponsive so she’s become more demanding. She’s getting results but she is being labeled as “difficult,” a term that makes her feel hurt, defensive, and angry. Defensive, angry people aren’t the easiest people to talk to, so the school special education director isn’t eager to call her back when she requests another service for her son – which only makes Jyl more sure that the school isn’t really interested in helping her child. Back and forth it goes, with each side feeling more misunderstood and less willing to work together.
This kind of situation can feel impossible. When patience and resources wear thin, it’s too easy to fall into blaming or demonizing the other. Parents get labeled as “difficult.” The school gets labeled as “unresponsive.” Neither is probably fair. Both Jyl and the special education director are under pressure and doing the best they can for a child who doesn’t fit easily into the standard school curriculum or usual school routines. The way out is for both to resist the very real pressures to be in conflict and instead to get on the same team with the goal of seeing the child’s needs clearly and helping the child be as successful as possible.
Parents as Special Needs Advocates
Parents have a right to be difficult if being “difficult” only means that they are being strong advocates for their children. It’s just true that if they don’t stand up for their child’s right to an education, that child can be lost in the budget and political shuffles. There’s an important distinction between being difficult in the sense of being hostile or irrational and being a successful advocate.
Parents who are good advocates share these qualities:
- When school professionals suggest that perhaps their child needs less or different support than they thought, they don’t get defensive or angry. They ask for information and data. They agree to testing and evaluations. They do their homework and make sure they understand the professionals’ opinions. If they disagree, they share their reasoning. They are willing to get a second opinion. They are more interested in finding what’s reasonable than in winning an argument.
- They know the difference between wants and needs. They advocate for the supports their child truly needs and don’t give up. They are willing to drop extras that are helpful but not entirely necessary. They insist on their child’s right to an education but don’t inflate the definition of education to include things that are beyond the school’s responsibility. (A tutor for reading may be necessary. Private skiing lessons to help him develop more balance is fun but excessive when an occupational therapist can accomplish the same goal in the gym.)
- They keep the focus on what needs to be done for their child at this time. They don’t get involved with comparing the services their child receives with those of another child. The other family deserves confidentiality. They don’t dwell on past mistakes or the potential for future disasters. They know that a parent’s issue is only to make sure the education plan designed for their child addresses their own child’s problem a year at a time.
- They do their part to make sure that planning meetings end with real agreement about what services will be provided for their child. They understand the importance of clarity in the education plan and do everything they can to make sure they leave the meeting knowing exactly what has been decided. They don’t want their child to be without needed services while they and the school go through a lengthy appeals process due to confusion about what was agreed to.
- They respect timelines and expect school personnel to do the same. If completing a plan is dependent on getting information from the family, they provide that information as quickly as possible. They return documents promptly.
- They are insistent but remain courteous, respectful, and reasonable even when frustrated. They understand that school professionals are usually trying to do the best they can in spite of constraints that are beyond their control. They know there is no reason to be disrespectful when they have a legal right to services for their child.