The First Step......

As parents, we anticipate our child's first step with a delicious, intense jubilation. We encourage them and cheer them on at every sign of progress, no matter how subtle (ie: signs only visible to an insanely obsessed parent! lol) We celebrate every milestone and new accomplishment like she just became the first girl to step her cute, chubby little foot on the Moon. As parents, we are "conditioned" all of our lives to think of the process of having a child, and becoming a parent, in a certain "cookie-cutter" way. There are hundreds of books that will tell you EXACTLY what your child should be doing and when he/she should be doing it. We read these books while awaiting the arrival of our precious bundle of joy and we picture our future in a perfect, well documented, sequence of expected events. But we, as the parents of "uniquely-abled" children, at some point, all must veer off this "beaten path" and begin a journey through a very interesting, scary and different landscape. It comes at a different times in the "process" for all of us..some sooner than others, some later...but at some point we all realize we have to abandon the "cookie-cutter" ideas we were conditioned to have about raising our child. We realize that the "What-To-Expect" brand of parenting just isn't going to cut it in the new and frightening world we have been thrust into. What happens after we make this realization is what can only be referred to as "the grieving process". It is the exact same process that you would begin to navigate through if, for instance, you were suddenly and unexpectedly informed that you or a loved one had a terminal illness. It is the painful process of letting go of all the preconceived notions of what parenting was going to be like....of letting go of all of the preconceived images of your child's progress through childhood, adolescence and into adulthood...letting go of all the well-laid plans already cemented in your head about how you were going to raise your child.

This "grieving process" is described, specifically as it pertains to being a "special needs parent" below: (borrowed from http://sos-research-blog.com/01/stages-of-grief-and-a-child-with-special-needs/)

1. Denial 
- When you discover that your child has a special need your first reaction can be denial. We all have known parents who get stuck in this stage and never want to admit that their child has a problem. Unfortunately for these children, their issues are either never addressed or addressed too late.

1. Anger
 – When you get past the  denial, you can become angry. The anger may be directed at your child, at a spouse, or to the world in general. Rationally, you know your anger is misplaced, but emotionally you don’t know what to do with it.

1. Bargaining
 – Through the process of handling grief, you may begin to bargain with God or a higher power. You may try to make a deal–if I do this, then my child will get better.

1. Depression
 – As reality sets in and you realize that your child has a special need that is permanent and lifelong, depression may set in. You begin to realize that your child will not be cured and special needs will forever be a part of your and your child’s life.

1. Acceptance
 – Not all parents can get to this stage. Acceptance is acknowledging who your child is and recognizing her skills and gifts.

You do not have to experience these stages in order, nor do you have to experience all of them. You can move among the stages and spend different lengths of time in each. You can also be in more than one stage at any particular time. The stages are more of a guide to what parents may experience when learning that their child has a special need. Melody Beattie, a self-help author, agrees with Kubler-Ross’ five stages of grief, but adds two more: obsession and guilt.  Obsession refers to the need to tell your story over and over again. It can be very important and part of the healing process to have other people hear your story. It is crucial that others do not try to fix you or the problem, but rather, just listen and let you heal.It is typical for parents to feel guilt when they have a child diagnosed with a special need. Guilt refers to blaming yourself and trying to determine what you did wrong.  Rationally you may know that you didn’t do anything wrong, but emotionally you still blame yourself. Coping with feelings that come with having a child diagnosed with a special need is a personal experience for each parent. Family and friends can be supportive through the grieving process, but it is an individual journey. It’s important that parents allow themselves to go through this process and feel what they feel. The hope is that by working through the process and coming to acceptance, parents will obtain great joy in seeing their child with all her special and unique gifts.

I want to think that I have reached the acceptance stage, but I will readily admit that staying there is a whole different ballgame. I find myself oscillating back and forth between two extremes....feeling like acceptance is "giving-up" and sentencing my child to a life as a "disabled" person with no hope of a "normal" life and then feeling like it is the only way to truly and fully love my child for who she is and instill in her the love for herself that she so desperately deserves.

It is in this spirit of acceptance (mixed with hope and the determination to continue to help my child excel in her areas of strength and progress in her areas of weakness) that I take my First Step....this blog.