When one pictures parenthood they see themselves as perfect parents with perfect kids. Children will be well behaved and, if all goes according to plan, will be captain of the football team or dance diva and go to the best colleges on a full ride. Parenthood is supposed to be filled with lots of girl scout cookies and football games. (Don’t believe me, just get a load of the Netflix show Yummy Mummies!)
No one expects news from the pediatrician, “Your child has some special needs.” Cancer. Downs Syndrom. Autism. Those scary words are not on the top 100 of what you want to hear from the doctor. I have heard it described as a feeling of being put in shackles.
Immediately upon hearing that your child will have more needs than a “streamlined” “average” “normal” child, your life changes. You enter the grieving period. You grieve the football star. You grieve the dance recital. You grieve the sleepovers and parties. You grieve a life you planned for your kid…and yourself.
Denial. Anger. Bargaining. Depression. Acceptance. These are the five stages of grief. As a parent with special needs, you will (and we did) go through all of these stages…again and again. But, I would argue, every parent goes through these stages over something about their children.
I know parents who grieved because their child didn’t grow up to the NFL football star. I know parents who grieved because their child chose college instead of military service (and viseversa). I know parents who grieved the loss of children. With children (and here is the part they don’t tell you), you will grieve…at some point…over something. Anyone who says something different is selling something.
When my husband found out our little guy had Autism denial was the word of the day. He blamed our son’s behavior on teachers and babysitters. He blamed the delay on lack of routine due to deployments. Autism just could not be true; not for his son…not for our family. Surely the doctor was wrong…surely there was a need for a second opinion…surely this life long diagnosis was not meant for our family.
I came into the picture later in our son’s life. Children were never really a part of what I thought my family life would include. So, as marriage was a packaged deal, I skipped to step six. But many of my friends have told me story after story of denial. It is from their stories that I write today.
Hubby never really got angry. He skipped the next two steps…once he came around.
Anger is something I can relate to. With Autism there is never a dull a moment. For every two steps forward, with every small change, one can “regress” four steps back. This gets old fast.
This stage of grief comes in waves for me.
When I see my son make so much progress and then we get orders to move and behaviors I thought we had overcome a long time ago come back; when hormones begin to hit and my son has more challenging behaviors; when no one comes to his birthday party because he is considered the “strange” kid; when no one wants to babysit because they do not understand the diagnosis I get angry. I get angry at the diagnosis. I get angry at life. I get angry at me for not knowing how to better understand or handle a situation. I even, yep, I get angry at God for allowing something like this.
Now, please don’t hear this as life is angry. It is in no way angry. These are just stages that we go through as life molds and changes with us. We have learned to celebrate life. But I would be lying if I said I never got angry over the reality of life with special needs.
For some of my friends the bargaining starts with God. “God, if you take this from me, I will go back to church” or “God, if you take this from me, I will volunteer more in my kid’s classroom and be a better parent.”
My husband and I both skipped this step. Perhaps because he is logical and just deals with life as it comes and I already believe God has the best plan for me to give me a hope and future. But this stage is often a long-lived stage.
When I found out that my little guy had autism…well, I did not deny at first…I skipped to the sixth step. But when I realized his nieces and nephews of the same age were joining sports teams and having play dates and birthday parties, I jumped to depression.
The life of a parent with special needs is a lonely life. People, in general do not understand (or do not want to) the reality of life with special needs.
Many times, when I would reach out to family and good friends, I learned quickly that many challenges with special needs need to be faced alone within our immediate family. Instead of support, I learned we got pity, ignorance, and family and friends withdraw. You quickly learn who your true friends are…and they are few and far between.
For me, add in being a military wife and moving every few years, I have found finding friends and keeping them to be much harder.
This is sort of where I came into the process. Because my husband and son are a packaged deal, I just came to terms with the fact that my life was forever changed by the sweetest and most challenging kid I could ever imagine.
It was at this stage I started researching.
I researched what caused Autism (spoiler alert – NO ONE KNOWS). I researched cures for Autism. Guess what? There is none. I researched what effects those with Autism and how to make life easier for them.
There is so much out there! From ABA therapy to diets to vitamins, this field is young but connected. I have learned so much!
One in fifty-nine children, according to the CDC, has Autism. Autism occurs in all races, ethnicities and socio-economic classes. It is the fastest growing diagnosis in America. But it is also the least studied. Yet, nowhere in the research did it say this was a life-ending diagnosis. Nowhere did the research say life stops because of this diagnosis. Nowhere in the research did it say this was the person.
With a variety of tactics and lifestyle changes, my family is more and more healthy because of this diagnosis. We eat better. We spend more time together. We even communicate better – believe it or not.
For those wanting to know right away what we did to get my son from not talking to talking or from not being able to hold a broom to hitting a tennis ball with a baseball bat, I promise to share.
For those who just found out their child has a special need or life-threatening condition, it is a process. No one expects you to have all the answers. And the stages will come and go in waves…if you are anything like me.
But, you are NOT alone! No longer should we be a community that hides away. Reach out for help. If you’re angry, be angry. If you are scared and depressed, reach out! No one should have to walk through life alone.
Man is not an island. There are probably more people than you know in your life touched by this need or that need. Go for a cup of coffee and vent or watch a good documentary or enjoy listening to the problems of others (believe me, it really helps to know you are not the only one with problems!)
But, please, don’t let the circumstances of life dictate how you live it. You are the rudder of your ship. You get to choose which way you go.
Choose life. Choose hope. Choose joy.