Lots of things happen to you as a parent when one of your children is diagnosed with some sort of special need. It is almost as though you have to mourn the loss of the child you thought you had/were going to have before you can move forward with the child you actually do have.
Here, I am using a 7 step model, based on Elisabeth Kubler-Ross's 5 Stages of Grief. I'm sure Dr. Phil or Dr. Oz would have something to say of the validity of this model; I agree, this is very linear and makes a whole lot of sense on paper when you aren't going through something, and while grieving, there is no right order, no "right way" to do it. I will tell you that I have found life to be much messier than this "complete phase 1, move on to phase 2" model. Real life has backsliding, combining of phases, hanging out in certain phases, and sometimes totally skipping a phase, but I think these are all very valid feelings that parents go through.
1. SHOCK & DENIAL-You will probably react to learning of the diagnosis with disbelief. You may deny the reality of the diagnosis at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.
2. PAIN & GUILT-As the shock wears off, it is replaced with the suffering of unbelievable pain. You may have feelings of guilt over things you did during your pregnancy-or didn't do. Maybe you know the genetic link comes from your side of the family and you feel somewhat responsible. Life feels chaotic and scary during this phase.
3. ANGER & BARGAINING-Frustration gives way to anger, you may lash out and lay unwarranted blame on someone else. Please try to control this, as permanent damage to your relationships may result. This is the time where you will generally release bottled up emotion. You may be questioning "Why me?" or "Why my child?" You may also try to bargain with God for a way out for your child ("I will go to church every week" "I will help other people with special needs as long as one of my kids isn't effected")
4. "DEPRESSION", REFLECTION, LONELINESS-Your friends may think you should be getting accustom to the idea of the diagnosis and moving on with your life; however, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving-especially if they have never received a diagnosis for one of their children. During this time, you finally realize the true magnitude of the diagnosis and it depresses you. You may isolate yourself on purpose, think of what limitations this might bring as your child gets older, and focus on what your child may never do.
5. THE UPWARD TURN-As you start to adjust to the idea of your child's diagnosis, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly.
6. RECONSTRUCTION & WORKING THROUGH-As you become more functional, your mind starts working again, you are able to wrap your mind around what you need to do next, and you will find yourself seeking realistic solutions to problems posed by your child's diagnosis.
7. ACCEPTANCE & HOPE-Eventually, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. You will find a way forward. You will do what needs to be done for your child. And you will acclimate to life with a diagnosis.
One thing that I've shared with very few people is HOW LONG this lasted...we knew from the time my son was very young-probably six months old-that there was something going on. I was pretty sure he hated me. I couldn't comfort him-but my husband could. I resented that. I resented my husband and I resented my child. How horrible is that? Every other baby in the world could be comforted by my usual mommy way of comforting, but my child wasn't. I really thought my child was broken.
At our 9 month check up, I mentioned all this to my pediatrician and he told me that not all babies are the same, give it time(hanging out in phases 1-3). I mentioned it again at our one-year check, "wait and see" again, finally at our 18 month appointment, he asked me to look up and read about sensory processing disorder and call him if I wanted to talk more about it. So there I was, still hanging out in phases 2 and 3, adding a little of phase 4 for good measure, pregnant and trying to parent three kids, one of whom I resented.
I finally had a name to go with the bundle of symptoms that had been living in my house. I found there were some things we can do to address these symptoms, so while phase 1 slipped back in and 2-4 were still a very real part of what was going on in my head, my body started carrying out phases 5 and 6.
More symptoms persisted, so more doctors were visited. He was two years old when I started to research with fervor and began to understand who my child was and what my child needed. This really moved me away from phases 1-4 (though those feelings crept in from time to time with each new realization and each new label)and on to phases 5 and 6.
The more I learned about my child and the more I started applying that knowledge to my parenting, I slowly moved into phase 7. By the time he was three years old, I was there. Only took me two and a half years.
During those two and a half years, I lost touch with friends-and I lost friends-who just didn't understand all that was going on. I was isolated in my own family, only allowing immediate family members into the personal hell I was going through, and even then censoring many of my thoughts. Two and a half years of denial, guilt, anger, resentment, isolation, censoring, and loneliness is a long time.
I don't want to act like everything has been sunshine and rainbows since that time-it certainly hasn't, but I love that this grieving process ends with HOPE. There is always hope.
More important than hope, is the ACCEPTANCE. This is your child. As a parent, it is your job to love this child unconditionally-diagnosis or no, difficult or not. Once I began loving my child for who he was and not who he wasn't, once I stopped trying to make him be consoled the way I thought was "right" and started comforting him the way needed me to, once I stopped thinking of him as broken and started thinking of him as special, that's when he finally, truly felt my love.
I'm a pretty quick learner, and it drove me crazy that my husband got there years before I did. I felt like I had so much time to make up. Loving my child isn't hard; understanding how to love him his way took years...
Let me encourage you. It's okay if you don't get there right away. To really be genuine in your relationship with your special needs child, you have to go through the process. For some, like my husband, it is a process that will take a matter of minutes each time something new develops. For others, like me, it will take much longer.
As you are going through these stages, reach out to those around you. Try not to shut people out. Ask for help. Have open dialog with your spouse about where you are in the process and how you are feeling. Don't sugar-coat things or say what you think people want to hear. Most importantly, allow yourself to feel what you are feeling.
Realizing that your child is not going to have a "typical" life is huge-but when you finally accept it, you will be able to hope in the future.
No comments:
Post a Comment