I have written about the Five Stages of Grief and how it relates to Special Needs Parenting. I've gone through Denial, Anger, Bargaining (Guilt), and now I'm on to Depression. But I was never really depressed about the loss of Dovi's skills, and the loss of the child he was. Not depressed. Upset, angry, devastated, sad. But I was never unable to continue functioning because of it. But truthfully, not every person who goes through a loss goes through real depression. I don't know if there is a better word to describe the emotion I want to use instead of depression. It was still a kind of Anger, I suppose, but it probably falls under the umbrella of depression. The reason I'm writing about this now, is because the next post after this will be about Acceptance. At the time of this narrative, January 2012, I had still not really accepted the situation. Accepted the reality of it - yes. I was not in denial. I was doing everything I could to help Dovi, and to help our family survive. But I had not yet reached Acceptance - as in accepting that this is G-d's will and His plan for my family and my life. I was still resentful and fighting it.
The underlying issue, the reason for my resentment and inability to accept this was all Divinely Ordained was an old, festering wound; an issue I had been struggling with since I was a teenager; a coveted status that seemed out of reach. I was longing to belong. To be normal. To be like everyone else. In the cookie-cutter society where I live in, there is little room for individuality. If you're not exactly like everyone else, you stand out like a sore thumb. And "exactly like everyone else" means: Married by 20. Mother by 21. Mother to at least six kids by 40. All kids well rounded and 'normal'. And of course, being a whiz in the kitchen with a clean house, kids neatly dressed and pressed, and having no other aspirations beyond the kitchen. If you're 'differnet' than any of the above in any way, you're, well, you're a sore thumb.
I started out in life with negative credits in the 'belonging and normal' department. I was always the dreamer, the writer, the actress and comedian, with no outlet for all of these talents. Instead, I was deprived of the ubiquitous Hungarian 'kokosh cake gene' as I call it; I despised all manner of housework and domestic arts. Shopping bored me to tears. I loved reading, writing, and dreaming. I was a little 'weird'. They called me '101' in school - that I was 101% normal/IQ whatever. I actually wore that title as a badge of honor; I considered myself the smartest girl in school. Ha. But book smarts and world knowledge don't really help you socially. I wasn't a 'nerd'; I dressed stylishly and had friends and was popular, but I always felt like an outcast, slightly apart from everyone. Asperger's perhaps? I dont think so, as I didn't have trouble reading social cues or expressing empathy. ADHD more likely, as I was diagnosed finally at the ripe old age of 34 after a lifetime of struggling and suffering.
I got married "slightly" late-ish; a month shy of my 20th birthday. Since I was one of the youngest kids in the class, almost everyone was married; they were also expecting already. So by the time I was married six months, all of my close friends were mothers. I was beginning to 'fall behind' in the natural occurrences in my social circle. As time went on, I completely fell out of my social circle; I was in a class of my own, a world of my own. Infertility set me apart. I wasn't like everyone else. I couldn't relate to the 'normal' people, you know, the ones who popped out kids on demand - or before they were even remotely wanted - and who lived a life of domestic bliss (so it seemed to me from the other side of the fence), who spent their days cooking and cleaning and shopping and gossiping and lunching while I slaved at a job I hated and spent my mornings at the doctors getting probed and evenings at home pricking my thigh or backside or whatever body part I was ordered to that day. And I couldn't relate to people going shopping for matching kids clothes while I dug myself deeper into debt trying to finance the medical costs of conceiving a hypotethical kid. In other words, I was worlds apart from the 'normal, regular' Brooklyn housewife. And I hated it. I longed and prayed for the day I would belong - and simply be like everyone else, without the status symbol and the hushed, revered whispers of pity around me, being married so long and everything.
And then, finally, it happened. After nine years of being on the outside looking in, I was "in". I was a mother. Chaim made his grand entrance into this world, 7 weeks ahead of schedule, and I finally belonged.
Parenting a preemie is something that also sets you apart. I couldn't relate, once again, to the normal discussions going on around me. I was busy waiting for milestones. I was bottlefeeding instead of nursing (drat preemie inability to latch!) I was planning my day around Chaim's OT and PT sessions. I was 30 years old and only a mother of one 1 year old, while my friends were starting to think of bar mitzvahs. I still didn't quite belong.
And then Dovi was born. Finally - I belonged. I was normal. I had two small children, and my older one wasn't letting my younger one live. I finally had two kids to dress in matching shirts. I had two cute blonde, blue eyed boys. My problems weren't bigger than other people's problems. Normal stuff. A kid who misbehaves. Okay, he was getting SEIT and having social issues and things, but other people's kids have those problems too. It was a glorious 18 months.
And then.... well, you know what happened. The stink hit the fan. My life was shattered. Forever. I was a new class of people once again. A special needs mother. An autism mom. Isolated. Alone. The only person in my community dealing with this. Yes, I know it's not true. By now I have hooked up with plenty of other autism moms. As a matter of fact, just today I spoke to another local autism mom for an hour. But when all this started, I had no one to talk to. And you know what? Even now when I have plenty of autism mom friends, in many respecsts, I am very alone. The loneliness / 'uniqueness' is magnified on every legal holiday - because Dovi is the only kid who has nowhere to go on a legal holiday. Everyone else goes to the Clinic's Respite Program; but Dovi is too young for that program (you have to be five). The other kids are high functioning enough that they can attend any regular ed school with a shadow or counselor. I am ironically writing this on President's Day - Dovi is off again.
By now, after that life-changing talk I heard - which is the next post I will write IYH - I no longer think this way. I have accepted my 'uniqueness'. But a year ago, prior to entering the hallowed, incredible world of Acceptance, my resentment festered during every legal holiday. Why, oh why did I always have to be different? Why was I the only mother of a payos yingele who is home twice a month for some holiday that has absolutely nothing to do with me? I hated it.
So let's just say that this was my own psychological shortcoming, and I should have stopped looking into other people's plates and focused on mine. But the 'being different' didn't only manifest itself by virtue of having my kid home on days that mean nothing to me (Plus, of course, all Yomim Tovim and chol hamoed and Erev Yom Tovs - double whammy). It was getting very difficult to attend family gatherings such as weddings, Chanukah parties, and Purim seudos.
My husband is blessed to be part of a really large family. He has, bli ayin horah, many sisters. And 2 brothers (and their wives). I enjoyed a really close and amicable relationship with most of them. During my long bout of infertility, it was a little bit strained, as I had a hard time sitting around pregnant women and small babies. But I was very open and honest about my expectations of them (pardon the pun) and it usually worked out nicely. Once I became a mother, I was able to be 'part of the crowd' more or less, even though I had fewer children than all of them and still didn't have any daughters, so talking about matching dresses bored me to death. But once I became deeply involved in the Dovi situation, everything changed. Drastically. From my side, my sisters'-in-law chatter was so inane, trivial, and shallow. Matching dresses? Who cared. I had nothing in common with these people. My life revolved around ABA, Res Hab, exhausting bouts of cleaning up Dovi's messes, and dealing with the searing pain of being a special parent. My SILs, who are not emotionally upfront people like I am and tend to hide hardships in some private corners of their hearts, were uncomfortable with my blunt conversation about my torn-apart life. It was compounded by the fact that my husband has a special needs sister (who does not live at home). Being in Dovi's presence, and/or hearing about how tough life with him is, dredges up all kinds of unwanted feelings in my SIL's and my mother-in-law, and it doesn't foster for a comfortable social event.
It just so happened that there were several family events last winter, and it got harder and harder for me to sit through these events. I was either bored out of my mind with completely trivial chatter, or intensely anxious at the havoc Dovi was wreaking on the carefully set tables. At one point I was reduced to tears because I was texting some supportive friends about my discomfort and my mother-in-law suggested that I put my cell phone away. I jumped up from the table and cried, "Dresses, jewelry, shoes and wigs, I'VE HAD ENOUGH!" and ran into the bathroom, crying.
Being a sore thumb, feeling like an outsider, feeling desperately lonely while sitting in a room with over 100 people, is one of the most horrible feelings a person can experience.
So despite accepting Dovi's condition, I had not yet accepted that my life was destined to be abnormal, that I was living a life mapped out for me exactly by my Creator, for reasons unknown to me. And I could see no way out of this trap, no respite from the crushing feeling of unfairness.
But the same Creator Who had saddled me with the challenge of being an autism mom, also sent along the tools to deal with it. Since I was having such a hard time finding the strength inside of me to deal with it, He orchestrated events to show me just How much He loves me and just how much I still had to learn about myself and about the unique way He runs His world.
And this, my friend, brings me to the climax of this blog - the very entry that I have been aiming for since the inception of this site. Hold on to your bootstraps and fasten your seatbelts, for you are about to experience the most eye-opening, shocking revelations - so simple, so elementary, yet elusive to most people. Realizations that we should know automatically, simple truths that we should have imbibed years ago but are too wrapped up in the struggles and conditions of our lives to really see. I promise that you will never be the same once you read my next post.