Shedding the Skin, relief for parents of disabled children

Coming back to life, finally getting past the stigma and unwanted opinions

I feel as though I have finally shed the skin that enveloped itself around me and my family for the past 13 years. The veil of mystery, the lack of comprehension that pushed itself into our lives without invitation. We lived beneath it for so long, that now that we have pushed it aside, the world seems much brighter.

When we first discovered that there was something different about our first born son, our second child was only a few months old. This left us very little time to sit back and let the news sink into our hearts and minds. It is also did not help us that those who were supposed to be the most supportive, were critical and judgmental. They made comments and played the guessing game with us regarding every move we made. As a young couple, exhausted and bewildered, this was not helpful nor was it welcome.

I spent many years isolated, believing that we did not belong with those whose children were affected by autism. Our child had speech. Our child could go to school and not have to attend special education classes. We did not fit in anywhere. We could not relate to those who had neurotypical children, nor could we relate to those with children who had special needs. We felt lost, and left out. What did not help us was those who thought they were doing the right thing and continued to tell us that this was a "stage" and that our son would grow out of it. Worse were those who told my husband that it was my fault. That I was making my son the way he was since I needed to have a child with issues to feel complete. Huh? Have you ever heard such an load of nonsense in your life? Well I have. To top it off, why would one want to stick a wedge between a married couple who were fragile at this moment in time? Why would anyone want to make us not be strong enough to handle anything that came our way? I will never know that answer. I can only suppose that they were making themselves feel better because they did not want anyone related to them to have any afflictions. Ignorant, sad and damaging. Others pushed us to place our child in situations where he did not belong, with children who did not have issues that were anywhere near his. This would have caused him regression. They suggested that we were in denial. Again, not helpful.

We went through some pretty awful times in our marriage due to the problems associated with accepting that your beautiful, perfect little angel has some issues. I do not know for sure, but I suspect that if we did not have that negative and divisive opinions from others we might have fared a bit easier. I do know that we are survivors. Many of my friends are on their own with their differently abled children. Either the father could not handle the situation or the parents simply could not do what needed to be done and work on a relationship at the same time. It is a lot of work, some cannot get through it. I often hear about outside influences making things far worse than they were. It is not right, people need to learn to back off if it is not happening in their own relationships. You cannot understand unless it is YOU. Not every disabled child is the same, not every marriage handles things the same. Tread lightly giving advice.

So now, I see us finally coming out from the dark, cold room we hid in for so long. Our son is getting older. He needs more and more advocacy from us. He needs to know how to do it himself. We need to start living again. If there is a situation that we feel will not be good for our family, we simply say no thank you. We no longer suffer through things knowing that in the end we will receive advice that we are not interested in from people that have no idea what they are talking about. Whether it is popular or not, it is about US, as a couple and US as a family. That is truly what matters at the end of the day. We put ourselves first.

As I walk each day in the fresh air, longer and longer each day, I feel as though I am set free. I am still filled with anxiety. I worry for my son, what will happen to him, how things will pan out for him in the future. I worry for my family since we forfeited making money(my full time job) in order to put advocacy for my oldest son first and foremost. I am always concerned for my younger two children, whether they had a proper childhood or not. Will they grow up and need therapy from all that they have had to endure and sacrifice throughout their lives? I hope and pray that my marriage to my best friend continues to grow stronger and better each year. We went through some pretty dark times. Times I could never have envisioned when I agreed to marry my dear friend and lover over 20 years ago, near the beach when he proposed to me. We are the best we have been in years as a couple and I want to insure that it never changes and if it does, only for the better not worse.

So onward my feet pound, walking off all that anxiety. At the end of the 3-5 mile power walk I feel relief. The sweat pours from my body and it is as though all of the stress is washed away with it and I can once again think with a clear head. What is really important in my life? Whose opinion do I care about the most? The answer is me. My opinion, my family, my marriage and my life. This is what is important. It does not matter what anyone else thinks of the choices I have made, that my husband and I have made as a couple. At the end of the story, the people who are telling the tale is us. We decide. We make it happen, for better or for worse. The realization of how so many things I used to be concerned about don't matter anymore, is like a snake shedding skin and being able to move forward with a fresh, clean outer layer to show the world. This is what I am finally feeling. There are many people who can relate to us, many whose experiences we can benefit from. However, ultimately, this life is ours. No matter what anyone says or how they feel. OURS.

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