“The best defense is a good offense.”
These are words to live by for parents advocating for their deaf child. While the professionals—doctors, therapists, teachers, early intervention coordinators, school boards—may truly believe they have the child’s best interests in mind, it is up to the parents to digest all their recommendations and stand up for and make the best decisions for their child. Learn all you can, and once you know what you want, go in with a game plan to make your voice heard. This is advice I still have to remind myself of often.
No one knows your child better than you; remember that. But it can be overwhelming at first when making decisions for education and communication; choices that will impact the rest of your child’s life and shape who he or she becomes. This is a monumental challenge, one that may make parents question themselves. With so many options out there and so many different “experts” making suggestions and recommendations, it was difficult for us to know which path we wanted to take. I don’t want to imply that it was an uphill battle, fighting the system the entire way to get what was best for our son, because we did and do have many wonderful people helping us along the way. But I always have to remember that they each come from their own background and perspective, and I need to take some of those recommendations with a grain of salt.
In the beginning, I was not very well prepared to stand up for my son’s needs and what I wanted for him; now when I enter a meeting or approach a committee, I know I have to be prepared for attempts at persuasion. Of course the audiologist is going to recommend hearing aids. Of course the Teacher of the Deaf is going to try to convince me that ASL is the best means of communication. Of course the cued-speech therapist is going to advocate for that mode. And of course the school board, under pressure of the state and funding restrictions, is going to try to get away with the least amount of assistance possible. Now that I generally know the path we want our son to take, I try to be firm when working with all of these specialists.
If I had to condense my advice for other parents, based on my own experiences, I would say:
Step One: Listen. Absorb all the different viewpoints, especially in the beginning.
Step Two: Research. Read, read, and then read some more. Seek out different opinions, not just ones that may reinforce what you think you already believe. Don’t be afraid to change your viewpoint; I had to several times.
Step Three: Commit to a plan for your child. Recognize that there are multiple, legitimate paths, and no one perfect solution for every child and every family. Accept these differences and don’t assume that every deaf child needs to learn and communicate in the same way. But once you make the decision you deem best for your child, be steadfast in making it happen.
One of my son’s teachers told me that a frequent mistake she sees parents make is the mistake of changing their approach too often. They try cued speech and it’s not giving them the instant results they were hoping for. Or they try ASL, but after a few months, their child still isn’t signing back to them, so they think it’s not working. So they try an oral/aural method. Or they try mainstreaming, but don’t give their child time to adjust to new social situations, and assume they made the wrong choice and decide to homeschool. I’m not advocating or discouraging any of these particular options, but changing the game plan drastically and often can be confusing for your child. If you pick an option, you need to give your child a chance to adapt to it before assessing its value.
Be flexible and work with the early intervention coordinator, the teachers, and/or any speech therapists or teachers of the deaf you might choose. Most of them are good people who are good with children and want to help them. But remember that even though this may be their job, it’s your lives. You have far more at stake here. My son has a wonderful support system of people that want what’s best for him. But what I think is best sometimes differs from their opinions, and that’s when being a strong advocate is most important.
For example, my son attends a specialized preschool that integrates “typical” children with special-needs children of all types, ranging from mild speech delays to autism, developmental delays and physical impairments. For us, it is a wonderful integration of abilities and creates a unique community of tolerance and learning. My son has a teacher that cues, a teacher that signs, and a one-to-one aide to facilitate his communication and peer interactions. It is a wonderful school and I know he is benefiting tremendously. However, when the teachers advocated him attending full days, five days a week, I was hesitant. Parental guilt kicked in, and I wondered if I’d be robbing him of opportunities that he desperately needed. After all, these are specialized teachers who know what’s best for him, right? What will they think of me if I tell them I don’t want a full-day program for him at this age? Thankfully, I had an early intervention coordinator who helped me represent my objective for my son when I was too insecure to stand up for what I wanted, which was a three half-day program so that he could still spend a significant amount of time home with me, where I also work with him to develop his language skills. And thankfully, these are wonderful teachers who respect parental decisions and worked hard to design and customize a program for my son within the parameters that I wanted. I hope all parents are as lucky. If not, the advocating may need to be much firmer. I’ve already got my soapbox on standby for the school board once my son reaches kindergarten.
So my best advice to parents is to educate yourselves. If you choose a cochlear implant, great; but don’t do it solely because the audiologist told you to. If you choose to send your child to a school for the deaf, great; but don’t do it because someone told you that deaf people can’t learn any other way, or that your deaf child is limited and this is the best way for him to learn how to survive in a hearing world, or learn some “trade skill” which is the only type of job he’ll ever have (yes, I actually had someone tell me that). If you choose to mainstream your child, great; but be sure you read up on IDEA (Individuals with Disabilities Education Act) and know your rights for an IEP (Individualized Education Program). (While you’re at it, learn all the acronyms: CPSE, ADA, IFSP, TOD, SLP, and a host of others. Knowing the terminology will make you feel less lost when the whirlwind of “experts” first start throwing all your options at you.) Learn the pros and cons of all the options. Find out the failure rates of cochlear implants. Learn about the exact methods used to teach a deaf child to talk using an oral/aural or auditory-verbal program. Find honest and accurate statistics about ASL and literacy rates. Talk to other parents. Making informed decisions is key. Become the expert. And trust your judgment.
