Author’s Note: About four years ago, I had a Facebook connection who wanted to collect essays about the lessons parents of special needs kids had learned through parenting their kids. I agreed to participate. However, I’ve not heard anything more about the status of this piece. To date, I have not signed any releases relinquishing copyrights, nor have I seen any copies of the published collection. I am making the assumption that therefore nothing has happened with the essay. However, just in case, I am going to include some of my comments in response to what I had written oh so long ago it seems; this should make it a different enough piece I hope.
A long time ago, if anyone had told me that I would not be focused on my career (let me qualify: I do care about my career, but I am not the 80s image of the career woman) and that I would pour myself into three kids with “special needs,” (my youngest has Aspergers, and my twins have a host of neurological impairments resulting in multiple learning disabilities), I would have laughed. (Special needs is a broad category that encompasses the obvious disabilities like Downs syndrome and cerebral palsy as well as your more hidden issues like autism spectrum and ADHD and intellectual development disorders.)
Time and circumstances change you. The first roller coaster was preemie twins. I learned to trust God more and more. This was the first act of forgiveness. My original ob-gyn refused an early ultra-sound, so we didn’t know I was carrying twins or that they had twin-to-twin transfusion or that they would spend the first two months in a NICU. I had to forgive him, not because I wanted to, but because I didn’t want the anger to cloud my judgment where my twins were concerned.
Over time for the twins, there were all the specialists who kept telling me the twins would catch up eventually. Therapies were added and subtracted on a yearly basis, all with the comments that they were progressing. They did hit a brick wall intellectually, emotionally, and physically. When the psychologist who saw them at 12 asked me what I was expecting and why I seemed disheartened by the results, I wanted to scream.
“You and your kind lied to me. You all lied to me. You gave me false hope. You kept telling me they were progressing. The only thing that is crueler than not knowing is false hope. I like to look things in the face, know them for what they are, and deal with what is. You stole that from me.”
Instead, I took a deep breath. I forgave them all—the pediatrician, the developmental pediatrician, the school professionals, the original ob-gyn (after all, if he were on the ball, we could have done something)—again, I did not want my judgment clouded as I faced the possibility they would not live alone and would need a sheltered environment, which may not exist because they are just shy of most criteria for that kind of help. (Actually, they are doing well. They do learn, just at a slower rate and with different techniques. We are looking at a host of post-secondary options. The future is much brighter on this facet of the truth diamond.)
Sandwiched in there was the birth of my daughter with Aspergers. (Yes, in the US, this diagnosis no longer exists, but we won’t go on that soapbox.) Like my twins, she was slow with her development, but just a hair faster than her sisters. We got her all the therapies, which again were added and subtracted with the same comments. An educational psychologist working with her sisters’ developmental pediatrician asked me if I thought she had autism. I told him firmly no. Actually, I was thinking: Hell, no. She wants to be with people. She talks. She doesn’t run from people. She’s fine.
That moment haunted me for a few years, as my siblings tried to tell me autism knowledge had changed and she could be autistic. After some parents of autistic children picked my child out of all the children, I surrendered and had her evaluated.
She has Aspergers. The trichotillomania (hair twisting and breaking…and in her case eating) (This is now conquered through appropriate therapies! YAY! 😀 ), the constant talk on particular subjects to the exclusion of all else, the incessant humming—all were stims or expressions of emotional turmoil that she did not have words for or could not recognize.
Also sandwiched in there was a divorce early on for various kinds of abuse. (God is good all the time; He is moving in my ex’s life, and my ex is wrestling to become a better person than he would have been had we stayed together. Did I just write that?!?) The struggle to admit everyone who told me not to marry combined with the shame and guilt of knowing what I had put my kids through drove me to my knees, figuratively and literally. My pride and heart were broken. I had to do a lot of soul searching and therapy to figure out where I was broken and get fixed. At first, it was for my kids, but as I started to feel human again, it changed and was for me.
The hardest one…to forgive me. I have not been able to do this. I struggle with seeing all my bad decisions (like leaving chemistry as a career, marrying their dad, thinking I knew better than professionals) having consequences on my children and family. It’s like a wound that gets opened daily. It never heals. Yet, if I am to be healthy in mind, body, soul, and heart, it MUST be done. How to do it?
For me, the first step was letting go of my dreams and my vision for my children. They would never go to college. (Well, that may be changing.) They would never have a good job, a big house, and a large salary. (Yes, I bought the American nightmare for a while.) And that is focusing on the negatives.
The second step was to look with the proverbial rose-colored glasses, to see so much more clearly the matters of the heart that affect eternity (Actually, it’s more looking with mercy glasses or my Father’s eyes.). My children, for all their issues, have a love for God and His people that is unshakeable. Despite a nasty custody battle, they are accepting my encouragement to respect their father and his family, and they are praying for true conversion and peace in his and his family’s hearts. (And God is answering them.)
Their faith can move mountains. My oldest daughter prayed my mother’s migraine away one day a few years ago. The only type of headache my mother has had since then has been sinus, amazing because my mother’s migraines were legendary. As kids, if the door was locked to her room and the house was dark, we knew to entertain ourselves quietly and stay away until she felt better. My youngest asked St. Joseph’s intercession with his foster son Jesus for a step dad; less than two years later, I am happily married to a good, decent Christian man (not to say we don’t have our moments).
They have strength I don’t understand. At the end of my rope on a particularly bad day when I was sandwiched between an Aspergers-related meltdown and my older twin’s self-loathing and hatred session filled with tears, my younger twin (technically, middle child) asked me which of her sisters she could help. I sent her to my youngest daughter with instructions on deep breathing and constant, rhythmic back rubbing. My middle daughter made me want to weep. Emotionally under 10, she stepped to the plate when I needed someone most and gave me courage and energy to deal with the older twin.
These two steps began the journey of a lifetime. I am working on forgiving myself. I am so glad for some of my Protestant friends. They have taught me forgiveness is not a feeling. It is a choice. You must revisit it daily, and sometimes every second. I am a much different person because I let go of what I wanted and started looking at what really matters. Forgiveness—not just for others, but also for me—is part of that package. Yes, I have bad days where I don’t get the balancing act right. But I just go back to the first lesson in forgiveness, especially for me.
Through forgiveness, I have learned so much more. First and foremost, I’ve stopped assuming and using my assumptions to form judgments on other people’s behaviors and actions. I’ve started thinking outside the lines to learn that motives may be different than what are perceived. From dropping judgment, I learned both mercy and humility:
- Mercy because we never know what another is truly thinking and because appearances can deceive
- Humility because you never know if a person is having a rough life with circumstances far worse than your own
Finally, I learned to love another person for who they are, not what they can do for me. The work-a-day, career woman lifestyle left me hard and jaded inside. Having three kids who would probably never contribute more to society than a smile and a good attitude makes you see things differently. If you’ve been there and someone else hasn’t, the other person will never be able to fully understand the metamorphosis that goes on inside of you. I often take hope from the statement, made by a parent on one of the numerous Facebook support groups I participate in (sorry, don’t remember the person’s name), that my children may never cure cancer or the common cold or win the Noble Peace Prize, but someday, their smiles or spontaneous hugs just might stop that individual who would do those things from committing suicide (if I can buffer them from the bullies trying to create the same fate for my kids).
A final thought—are children part of the equation? Must you have children to learn these lessons? In my case, only having other humans relying on me for their protection and well being was what taught me these lessons. I truly believe without my children I would not have learned what I have learned and my emotional and spiritual life would be quite poor.
Parenting like forgiveness is a process—give it time.