by Matt Graffagnino
This is the second article of a three-part series about giving our children opportunities for inclusion in the community. This article addresses the very real process of grieving that some of us ignore, but we all have to go through before we can accept our Path of Destiny.
Grieving has many levels and is a very real thing. I believe the sooner we accept it, if we choose to at all, the sooner the healing begins. In my opinion, that grief—a loss of expectations for the “normal” life of a typically developing child—is the lynchpin in moving forward or not. It’s that important.
People just want to hear about the inspirational corner you’ve turned or how you did it. Well, for the majority of us, it sucked! It takes a heavy toll and comes with real struggles. The initial grief can be both mentally and physically exhausting and is something that only time and a person’s mindset can fix. Once we come to terms with the fact that our ideas and expectations need to change, not our children, then the process of moving on with our path can be achieved.
I’ve often been asked to write or speak at an event and tell my story of how I came out on the other side of the confusing and scary world of disability. Let me let you in on a little secret, I was an absolute mess 12 years ago. More like a puddle of inconsolable hopeless man. I was depressed, angry, sad, irate, scared, and whatever other adjective you would like to throw in there.
I went to work, came home, and went to bed. I could do nothing else but worry and feel sorry for myself about how life screwed up what I had planned for the future. My path of destiny was off the rails. I stopped eating, couldn’t sleep, and nearly wasted away to nothing. I was grieving and didn’t know it. But I got help. Medication and therapy were key for me.
There was no shame in admitting I needed help. I talked to everyone and told them about how my path was ruined. They listened. They talked back. They helped me realize things I couldn’t see.
I met parents who had older or adult children with challenges, and they told me it would get easier. At the time, it was very hard to believe, but they were right. It did get easier. With the right philosophies, I found that you can achieve a different kind of normal.
With the right philosophies, I found that you can achieve a different kind of normal.
Let’s face it. The life of a parent is a hard one. The life of a parent with a child with special needs adds another ridiculously hard level to that. Raising children is a hard job regardless of their ability. I think as parents of special needs children, we need to recognize that. We are wrapped up in a different level of care, so intensive and routine based that we think, “No one knows the struggles I am having!” And that’s true. Most people don’t. But all parents have struggles with children.
If we think about it objectively, I may grieve the fact that my son will never drive a car, but I’m never going to have the argument with my kid about wanting to take the car out on a stormy night.
I may be grieving the fact he won’t be on the football team, but I’m not going to have to worry about my son caving to peer pressure at a victory party to try drugs or alcohol.
These are very real parental worries that could affect the path of destiny for your child. By putting these things in perspective and accepting the struggles you have, and realizing the ones you don’t, makes for a healthier life, body, mind, and soul.
I was fortunate in that I developed the ability to write and express my feelings, which allowed (and continues to allow) me to heal. Because no matter what your attitude is, be it positive or ultra negative, a little piece of you dies when you are given that initial diagnosis for your child. You grieve for your child and yourself because the dreams you had are changed.
It does get better with time, but it always seems to come back out again at a doctor’s appointment or I.E.P. meeting when you’re being told about milestones not being met, or development that’s not on the proper course. This is to be expected, but it’s still hard. Recognizing and dealing with the grief can turn into a driving force that can create opportunities for inclusion. Thus, doing better for them and you.
Recognizing and dealing with the grief can turn into a driving force that can create opportunities for inclusion. Thus, doing better for them and you.
So, I guess the moral of this story is this: Providing a rich and fulfilled life for our children might not happen without providing that same model for ourselves as caregivers. It’s important to address the truth about what we go through, the ups and downs because dealing with grief is real. But, like most things in our lives, once we accept our struggle, we can overcome and move forward to the rich full life we all deserve.
I love my boys for who they are and how they’ve showed me the true meaning of life. They have put things in perspective and have shaped me into the person I am today.
In my next article I will tell you about my son’s greatest inclusive achievement to date that made me so proud! Fight the good fight my friends and remember this, you may feel alone or lost, but you are not… Your Path of Destiny is waiting for you to take the first steps.
About Matt Graffagnino
I’m the father of two children with special needs. Writing enables me to release my emotions and fears for my children. I try to tell a story about my life experiences that other parents can relate to and say, “I totally know what he’s talking about.” My writing is similar to how I verbally tell a story, with drama and a bit of comedy infused with wild Italian hand motions.