Parent Decision-Making

The issue

What are we doing? Is this right? How do we know?  There seem to be more questions than answers as we make, and have made, decisions regarding the health, welfare, and education of and for our deaf children.  And yet, we have two incredible deaf kids who have exciting and open-ended futures ahead of them.  So, we must have learned something?  And we did!

What we know

The first thing we learned is that most decisions are not (or do not have to be) permanent.  We have changed schools, therapists, methodologies, equipment, doctors, programs, and languages.  We would get the best information we had at the time.  We put our full and complete effort into the project, and then re-evaluated our child’s progress after 6 to 12 months.  If things were meeting our expectations, we stayed the course and looked for ways to increase the positives outcomes.  But, if things were not improving, we were fearless in making changes, sometimes radical adjustments, to try something new.   We were never satisfied to continue with mediocre outcomes or “to be fine” for more than a year.  We always wanted “better” and the “best” for our children and were willing to turn around, admit something didn’t work, and look for something else.  Getting early amplification, language, and literacy are essential cornerstones.  However, the rest needs to fit your child and can grow and change as your child does.  We are never finished making decisions.  It doesn’t matter how exhausted, frustrated, or broken-hearted we get, we need to wake up the next day and make the best decision we can for our children.  Every year we actively investigate options for our children…should we stay? Should we change? How are they really doing?  We learned not to be afraid of change and work for progress.

We also learned that we need to be the prime decision-makers with our children.  We are the only ones who have to pick up the pieces, gain lost ground, or fight for new options when a dead end appears.   We will have to do this for years to come, long after professionals close their office doors, retire, or get new students/patients.  We need to be sure that our voice is heard and that we are actively involved in the process.  We will be the ones to still walk alongside our children next year, after graduation, and through their adult lives.  Those decisions are our family’s future, after no school or hospital remembers our name.  We need to be the strong voice at the table.

What we don’t know

We don’t know how it will all work out in 6 months, a year, or the much farther future.  It is scary to be deciding things now without the benefit of a guarantee of success.  But if we remember that we can change our minds and approaches, that we are able to constantly look for the best and modify our methods to get there, and that we are the basis of the solution, the future isn’t that far away.  When we approach the “future” as what is working for this year, do that successfully, and then repeat that mindset for the next year…suddenly the future is built on a foundation of many successful years or re-vamped decisions and we are “guaranteed” that it will all work out, because we have been working on that one decision at a time.  The future starts now.  Asking other parents who were doing this too, was key.  We can’t accept low expectations, below grade level results, and habits or norms that lead to mediocrity.  We may not see the future, but we can be sure that we are putting in the necessary pieces to steer in the right direction.

Implications

We had the goal of giving our children the ability to choose for themselves who they wanted to be, how they wanted to function, and where they want to thrive in this world.  To do that, we needed to offer them a wide range of options, skills, instruction, and knowledge across the spectrum.  The only way our deaf children can choose for themselves is if they have been exposed to it all, taught it all, experienced it all, and can then make a TRUE decision on what they want, because they have firsthand knowledge about it all.  That was a permanent decision!

Posted on July 1, 2014 by
Erin and Matt Campion,
Proud Parents
campion1071{at}Comcast.net

Further reading

Marschark, M. (2007). Raising and educating a deaf child, Second edition. New York: Oxford University Press.  ;view details

Moeller, M.P., Carr, G., Seaver, L., Stredler-Brown, A., & Holzinger, D. (2013). Best practices in family-centered early intervention for children who are deaf or hard of hearing: An international consensus statement. Journal of Deaf Studies and Deaf Education, 18, 429-445.  view details

Poon, B.T. & S Zaidman-Zait, A. (2014). Social support for parents of deaf children: moving toward contextualized understanding.  Journal of Deaf Studies and Deaf Education, 19, 176-188.  ;view details

Yoshinaga-Itano, C., et al. (2014). Principles and guidelines for early intervention after confirmation that a child is deaf or hard of hearing. Journal of Deaf Studies and Deaf Education, 19, 143-175.  ;view details