…and now there are four

Life is about choices. Whether you have many options or you only see one, you make choices throughout life in order to grow and live.

When I had Son Number Two (SNTw), I was happy and raring to dive into the role of “real parent”. Because he was my second child, I felt like I was truly initiated into parenthood – no fluke and no accident about it, having two kids makes one more of a parent than one does. (no slight to parents of only kids) This is because having two kids puts you back to square one but without all the surprises of the self you went through with one child. It’s not that you know what’s coming from your kid (all kids are different) but you know what you, as a parent, are like and how you will handle things. You get, in a sense, a “do-over” and maybe this second time you can do things a little more like you wanted before. Or maybe you can adjust your thinking and do some things very differently than you had thought you would the first time. I think each subsequent kid brings that out. What you lose in newness and surprise you gain in maturity and expectation.

So, when SNTw was born, I was excited. I had already seen some mistakes i had made with SNO and I already knew many things were going to be different for us. And I was ready and willing to give it my all.

Of course, SNTw was rather different than SNO. He was a bright, sunny child who loved people. He had a tendancy to crawl into strangers’ laps and hug them on first sight. He was a charmer and he made people hug him back without the slightest effort on his part. I have so many pictures of him laughing…

By the time SNTh was on the way, I had already begun to suspect something was “wrong” with SNTw. We had had several episodes of linguistic regression. Bluntly put, he stopped talking. Didn’t point. Began avoiding people’s eyes. Wasn’t interested in other children. Was fascinated by objects and repetetively moving them. I knew what it was but I was afraid to really face it… Autism. I knew because my second brother has autism (among other disabilities) and I had done a ton of research on it. It was clear SNTw wasn’t like my brother and didn’t have all the other disabilities my brother has, but the Autism…. yeah, I could see it. But no one would believe me.
By the time SNTh was on his way, we had moved from Philadelphia to Atlanta. We kept moving and my (ex)husband kept changing jobs. Life was hectic and chaotic. It was all I could do to stay focused on getting through life… but I managed, when SNTh was barely born, to get an evaluation and diagnosis for SNTw. The doctors confirmed it without any doubt: Autism. Not PDD, not Aspergers, real Autism. I cried the day they told me, even as I already knew what I would hear. I cried for days after, in private. Because knowing it in your heart and hearing it from an unassailable source are two different things.

I cried because I was afraid of the future. I cried because of my brother and my mother. I had watched my parents -mostly my mother – go through years of hell trying to get help for my brother. I watched my parents go to meeting after meeting, therapist after therapist, school official after school official in order to get “help” for my brother. I watched my mother spend days upon days crying while I listened to her and held her hand. I saw her fill book after book in her journal, chronicalling everything. I saw those pages fill up and felt a mild dread in my heart because every new page she filled was another indignity, another slashed hope and another destroyed dream for her.

So when they told me without a doubt that my son, my happy loving boy who wanted nothing but to play with trucks and sit in my lap cuddling me was stricken with this same “inadequacy” as my brother, of course I cried. I think my (ex)husband was surprised with me. I had been trying to get everyone to listen to me, believe me and my fears so how could I sit there and cry when I had known all along?

Because I was facing a life like my mother had done. And I didn’t want it. I didn’t want to spend all of my time fighting everyone around me just to get help for my son. I didn’t want to spend days crying because my expectations were crushed. I didn’t want to forever feel inadequate and guilty because of something that I had not had any control over. I didn’t want to dedicate my life to what seemed like a dead end.

But my son is not my brother and I am not my mother. My brother is also mentally retarded, my son is not. My brother is deaf, my son is not. These are not things I can feel good about or brag about or even feel relief of… it’s jsut the way things are. There are tradeoffs for everything. That’s another seperate discussion though… I won’t go there.

What I want you to consider, dear reader, is what it was like… finding out three years after he was born, at least one year after my suspicions began, that what seemed like a perfectly “normal” happy sociable child was not. What seemed like an auspicious beginning of a new phase of my life, one I was anticipating and excited to be entering, was forever changed. My mother began her journey of pain in less than six months. That’s how early they knew something was up with my brother. I began mine three years after his birth and while dealing with another baby.

So you make choices. I chose, at that time, to do all I could do for my second son, but there was going to be a difference between me and my mother. She had had only him to fret over, being as I was 13 when he was born and my first brother was 6. She could care for us and still devote most of her time and energy to him. We did not miss out on my mother’s love or attention because we were old enough to demand it when we needed but be okay when it wasn’t there. By the time SNTw was diagnosed, I already had a new baby and a child entering school for the first time. So I made my choice. I wasn’t going to let my life be dominated by my second son’s “illness”. I was going to do whatever needed to be done, try to always stay on top of things but I wasn’t going to short-change my other children, my husband or myself because of it. I chose, to make his “illness” a feature in our lives, but not the star.

Now I have a daughter. I also have two sons with a form of Autism and a teenager with emotional struggles. I also come out of a two year period of intense strife, stress and heartbreak. So many things happened in the last three years I just am amazed I am still here. But all along, my choice was to “get better” and I promised myself that over and over. “get through this, get better…” was my mantra. “You can make new choices when youve made it through this part… just get through this part” that’s what kept me alive and kicking.
Now I’m here…. with another new baby. Before she was conceived, I had been asked “aren’t you worried about having another child? Do you think that you should?” as if having children with developmental disabilities was something I actually thought about before having them. Well I did think about it this time. And I decided I wasn’t going to let that spectre rule my life any more now than I did before. But again, I spent years in ignorance of what was goign on inside their heads. I spent years assuming and believing that all my parenting choices were ready to go, waiting in the wings of my concsiousness for the days when my boys would be old enough for my wisdom and guidance. I didn’t know everything would have to be constantly readjusted. I didn’t know I was travelling down the road of insecurity. I didn’t know I would be remaking my choices all the time, about everything. Now I have a new baby…

Can you see the fear I’m capable of carrying around now?

What choices will I have to make in two, three more years?

Of course she is a wonder. She is beautiful and serene and involved. She seems intelligent. She seems loving. She seems “normal” to me now.

But I’ve been here before. I’ve gone through years of happy ignorance only to be told “houston, we have a problem” when I’m about to start coasting.

I’m so happy to have my daughter. But yeah, I’m scared too.


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