One way to think about parenting is that it is a series of "letting go's". We let go of our kids' hand when they take those first teetering steps on their own. We let go of the bike when they make their first weaving solo trip on their two-wheeler. We let go when they walk into that big brick building on their first day of school and become part of the educational system. We let go when we hand them the car keys. We let go when they graduate and move away. And finally, we let go when they stand in front of their friends and family with their soul mate and begin their very own family.
With each letting go comes a mixed bag of feelings. Sometimes a bit of sadness, a tear, a lump in the throat, and a bit of worry. But that is often overshadowed by the feelings of pride and joy as we watch them grow and become the men and women they are capable of becoming.
Parenting a child with special needs has many of those same moments of letting go. But in many instances, there are other times to let go that can be very difficult.
Whether we realize it or not, many of us have an idea, an expectation, of what life will be like. When a child is first diagnosed with a disability, we are forced to start letting go of our expectations. We let go when, at a very young age, he stops getting any invitations to birthday parties. We let go when there are no friends to invite to his party. We let go when the preschool teacher calls for us to pick him up because she can't control his outbursts. There is a long series of "letting go's"... being placed on psychiatric and behavioral medications, adding new names to the long list of specialists involved in his care, starting family therapy to help siblings cope, needing more special education support in the classroom, setting up special funds and guardianship documents to provide for long term care, and most recently, extending his time in school so that he will not graduate with his class (see The PPT). Each "letting go" is a change in expectations about what our life will be like, and more importantly, what his life will be like. Each "letting go" is letting go of a dream.
Some experts who work with parents of kids with special needs compare this process to the well known stages of grief - denial, anger, bargaining, depression and acceptance. And we've certainly experienced all of those stages as parents. But what makes it difficult is that parents of kids with special needs go through this process repeatedly. I may be in a very good place of acceptance when suddenly there is a new "letting go". Then I find myself back in anger or depression and working my way through the feelings once again.
Most parents who have a kid with special needs will, at one time or another, stumble across a copy of Welcome to Holland by Emily Kingsley. This short analogy does a pretty nice job of summarizing some of the feelings for parents of these kids. And when she talks about the pain of "letting go" of the dream, she says it will "never, ever, ever, ever go away". And she is right. There is a certain relentless quality to coping with the needs of a child with disabilities.
Please don't read this and jump to the conclusion that we spend our lives being sucked into a quicksand of depression and sadness. That is not the case at all. Son17 is a great kid and has made huge strides in growth, maturity, and the development of coping skills for many of his disabilities. The doctors we've worked with have done remarkable jobs in providing therapy and medications to help him be more successful. And we've been very fortunate to have the support and help of many very talented professionals and many gifted and understanding teachers.
I also realize that in many ways, we are the lucky ones. Many families struggle with disabilities that are much more complex. There are plenty of kids who are medically fragile, kids with more profound learning disabilities, kids who are neurologically compromised in ways that cause seizures or other neurological complications. I can only imagine the struggles of some of those families.
For all of us, parents of neurotypical kids and parents of kids with special needs, we let go. Over and over. Many times we let go of the same things.
But sometimes not.