My first marriage was in trouble long before we adopted our 23-month-old son, Neal, from a Russian orphanage. That Neal was diagnosed with autism shortly before his 3rd birthday, only put Miracle-Gro on an already fragile family system.
Sure, the stresses of autism were undeniable: Neal didn’t sleep (which, of course, meant our sleep was compromised). He spun around in circles, opened and closed cabinet doors, pulled pictures off walls and could tantrum for hours. Autism isn’t pretty.
To an outsider, our home resembled a war zone. To my husband, Neal’s antics were a harsh intrusion. To me — well — my experience, though not without challenge, was one of awe and learning more than dread and despair. I must admit that the “A” word meant more than just autism. It meant Adventure.
Like many mothers of children with autism, I became a “Momma Bear,” intensely and excitedly focused on Neal’s interventions. I suppose I resembled what one of the fathers profiled in the film, “Autism: The Musical, referred to as “… a crazed mom of a disabled child,” “mono-maniacal,” and “self-involved.” He goes on to say in the film that his wife’s entire life “revolves around getting information and help” for their son — justifying his need to have an affair. Go figure.
I do need to say that my then-husband tried as hard as he was capable to deal with the challenges of parenting a disabled child. Some days, he tuned it all out and threw himself into his work. On other days, he went into “fix-it” mode, wanting me to find the right tool — therapy, drug, doctor — to get things back to normal. But you see, we never really had “normal.”
Our relationship problems existed long before we adopted Neal. The marriage was a perfect crucible for our character defects. I, the ultimate caretaker, put everyone’s needs and feelings before my own. My former husband, being extremely critical, reaffirmed my own distorted belief that no matter what I did it was never enough. We argued constantly. My part of the doomed bargain I struck with him was: I will be there for you if you will become who I want you to be. I see now how ironic that is, as even as I was totally accepting Neal, I was working tirelessly to get my husband to turn into someone he wasn’t.
Bringing a child, particularly one with special needs, into the mix made our preexisting condition only worse and, sadly, made my intense desire to stay together for “Neal’s sake” grow stronger. Fanatically committed to commitment, I tried everything to keep our family living under one roof: therapies, support groups. Some of these remedies worked for a while, and some just didn’t work, but eventually they were revealed as nothing more than Band-Aids on a wound that required a suture.
Sure, I could justify reasons to stay together: My former husband came from a wonderful, loving and supportive family. I didn’t want to lose this connection. He made a good living at the time so that I could quit my full-time job as a children’s acting coach for TV and film, to focus on Neal. I hated the thought of having to leave Neal with a babysitter so that I could work with other people’s kids. Plus, I didn’t want Neal to be without a father. But If I was completely honest with myself, the real reason I stayed was because I was afraid of being alone. I was afraid that I couldn’t raise a child with Neal’s significant needs by myself. And that no new man would ever willingly enter our “abnormal” existence.
As much as I tried to pretend that things were fine, in time, the tensions in our home became undeniable. One day, quite unexpectedly, my son’s therapy supervisor took me aside and said, “Neal will not get well in this house.”
I had to put my own fears aside. By doing so, I came to realize that by staying in this unloving marriage, I was already alone. I know now that there is nothing worse than feeling completely lonely when lying next to someone. Anaïs Nin’s famous quote became my mantra, “And the day came when the risk it took to remain closed in a bud became more painful than the risk it took to blossom.” (That and Nietzsche’s personal assurance, “That which does not kill us makes us stronger!”)
And blossom Neal and I both did. After plowing through the painful tribulations of divorce, the crazy court battles (still ongoing — don’t get me started!) — and Neal’s dysregulation from the the loss of our home and the change, both Neal and I have evolved stronger, more confident individuals. An update: I’ve recently remarried, to a man who works on himself, his issues, and has developed an intimate, caring, supportive role in my son Neal’s life. Although our lives are far from perfect, I am hopeful that we will continue to grow together on our paths.
If you are a parent with a child who has special needs and have struggled with having a different attitude than your current or former spouse, please write and tell me about your experience.