Parents come in every flavor and how each of them responds to the demands of advocating for a child with disabilities varies from one to the next.That said, there are some basic assumptions that can be generally made about parents of children with disabilities and they are, as follows:
- Parenting children with disabilities can be harder than parenting children without disabilities or, if not harder, hard in ways that most people could never even imagine. This can be particularly true for parents juggling the needs of more than one child, aging parents, and/or demanding jobs.
- Parents of children with special needs went through pregnancy or adoption having the same dreams of success and happiness for their children that all parents have. It can take some parents a while to adjust to the idea that their children are disabled and the path they will have to travel is different from what they expected it to be.
- No child comes with instructions and becoming a parent, particularly a new parent, involves a lot of figuring it out as you go. The frustration and feelings of inadequacy that often come with being a parent in general can be magnified when you become the parent of a child with a disability. You can end up kicking yourself much harder for your mistakes because more is on the line (or you at least perceive it that way).
- That said, many parents get through the initial stages of worrying themselves sick and settle into a reasonably comfortable mode of having a pretty decent handle on things for the most part, getting occasionally derailed by arbitrary medical, educational, or other service issues that arise involving agencies responsible for serving their children’s needs. When that happens, these parents can become angry.
- Being the parent of a child with a disability makes a person emotionally vulnerable. You can be reduced to feelings of frustration, fear, and failure in a nanosecond. When people actually step up and help you out, you can be so eternally grateful that you are brought to tears of relief.
- Asking for help is hard for some parents. When they finally bring themselves to do it and they’re met with resistance or game-playing, they can become incensed. When they ask for help and are received graciously with understanding and integrity, they will often become the best players on the team and defer where appropriate to the expertise of others.
- Disabilities that involve serious behavior challenges can turn an entire family upside-down. Parents of children with these kinds of needs are often exhausted, exasperated, and overwhelmed.
If you are a professional working with parents of children with disabilities, it’s important to take their feelings into account and truly respect them. Some of the ugliest behavior I’ve seen as an advocate has been public agency personnel mocking a parent’s emotional response to a difficult situation or using the parent’s response to discredit anything the parent has to say.
If you are a parent, realize that many people are uncomfortable with emotional displays and will use any emotional response you have as a justification to take you less seriously. Getting angry and blowing up at people almost never serves you. Crying during IEP meetings can be perceived as instability and weakness on your part and can cost you credibility.
When developing an IEP for a special needs child, parents need to go in and stick to the facts, treating the process like a business transaction. Speak from the heart and with good faith intentions, but remember that the purpose of any IEP meeting is to create the content of your child’s IEP, not belabor how certain people or events make or have made you feel.
If you fear that you’re going to break down or blow up about something, save it for later when you can write a to-the-point letter describing your concerns. If it’s that upsetting, you’re probably better off making the record anyway. Plus, when you deal with upsetting situations in writing, you can take your time and choose your words more carefully (which is important because written communication can become evidence under certain circumstances and you always want to think about how what you’ve written could be perceived by a Judge or investigator).
Additionally, when you’re exchanging communications in writing, the folks who are responding to you are more likely to think about what they’re saying before they go flying off the handle, too. In any event, they aren’t sitting across the table from you saying things that push your buttons and set you off.
Respecting the feelings of everyone involved in any collaborative process, such as an IEP meeting, is just common courtesy. Parents are usually the most emotionally invested members of the IEP team. After that, teachers who truly care about their students are usually the next most emotionally invested members of the team. Disrespecting their emotional investments in the child at issue is a mistake on the part of any of the other IEP team members. The emotional investments of parents and teachers in children with special needs make them more likely to come up with creative, appropriate ways to get the job done.
What are your thoughts and experiences on this topic? Post your comments and let us know.
If you advocate for a child with special needs, consider purchasing a copy of Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide.