Disconnects

Prior to realizing Zach's diagnosis, I felt that having children had made a huge impact on my life, much the same as many other mothers out there, I am sure. I was aware that having a child was going to change everything, and it has, but I wasn't sure how it would. While the change was sometimes construed as difficult, I was amazed at some of the positives. Being socially awkward, I realized that children are a great common denominator with other people. This allowed me to relate to people in a way I never felt I could before. In my career, and therefore many of my friendships, I was mostly surrounded by men and had learned to navigate the social uniqueness to them. I at some point preferred being around men (well geeky nerdy types at least) because it was the bulk of my exposure to others. When I first had Sophia, I mostly commiserated with mothers, and I felt as if I didn't know how to speak the language. I became impressed with my gender - because the birthing process and early days of infancy are excruciatingly demanding on a mom, yet we do it and encourage one another in the process. In the early days - there were playdates where I met great mothers and fathers that shared an interest in parenting and sometimes in the individual too. These relationships meant so much to me.

Then there was the connection with my mother-in-law. She was such a help when she was in town. Once strangers, then connected only be Steve, I was extremely grateful to have her by my side when I was trying to figure out some of this baby stuff. Where I have never had any major issues with my mother-in-law, I found that when I had children, and witnessed her love of them, our relationship deepened. She had joined "Team Sophie" and then "Team Zach". And when someone joins your kids team like that, your bond is strengthened.

My relationship with my mother was one of the more profound changes I went through. I love my Mom - she is a great gal, but sometimes felt like we were about as opposite as any two women could be. I felt she never truly understood me. When I had Sophia (and let's just say she wasn't the easiest baby in the world) I was so aware of all the my Mom had done for me, and all our differences seemed insignificant. All I could think of is my mother having gone through all she did for me. I would always be grateful for that.

The other day when talking to a friend with a child on the spectrum, this terrific mother mentioned that she had a conversation with her own mother, and that at some point, she realized her mother could never understand the nature of her problems of parenting her son. As she told me this, she began to tear, and I realized that all that connecting that having a child does, is seemingly undone by a disability. Indeed, I feel this way.

I had the recent opportunity to hear a professor speak on autism treatment. As part of his speech, he emphasized that autism is primarily a social disorder, and not a learning disorder. I realize now that my son's autism may be contagious - parents of kids with ASD likely have social disorders too, some of them prior to diagnosis, but others a consequence of it.

First off, my very poor relations to my family. This has been heartbreaking for me beyond explanation. I am not going to say it is their fault necessarily, it may be not. But it is strained, to say the least, and I have given up on reaching out to many of them and asking for help. I need all the energy I can muster for my kids right now so I cannot extend myself any further. I feel they don't get it and there is no amount of explaining that will ever get them there. I feel they could make a contribution to Zach's success if they could take the time to learn and spend some time with him. Apparently, they are unable to do this. They do have lives of their own after all. I always thought that if I really needed them, they would be there. Perhaps they don't realize our need. Perhaps, they think I am full of crap that autism is treatable, that Zach is teachable, that intervention makes a significant difference, that they could help intervene. I am obviously not a good salesman.

When this mother cried as she realized the disconnect from her mother, I realized that my relationship with my mother has changed. My mother is a proud woman, I was scolded throughout my lifetime for bad hair, makeup, and clothing. She was definitely one of those "what will the neighbors think" sort of people. When I chose engineering as a major, she scolded me; she had wanted me to be a lawyer. I never was quite sure if this was because she thought my abilities were better suited to law or if she just found it to be a more prestigious degree to have in my back pocket. Even upon getting my masters, first one in my family and 100% financed on my own, I never received kudos. I sometimes wonder if Zach and his behavior would not cut the mustard. While I don't feel my mother is embarrassed by Zachary, she tells her friends and people she comes into contact about him, and is always surprised how many other people are touched by a child on the spectrum. She has read a few of the books I passed to her on autism. She hugs him and smiles at him when she sees him. She comes around and visits him. She pays attention to the news reports on autism. I see her love him no differently than some of her uber-achieving grandchildren in medical school or on scholarship at a top notch university. I also think she would rather me just accept him as he is, and not be so impassioned in my attempts to get him to communicate better. A disappointment once again, the connection once so heightened, now diminished.

But, at first where I was angry with some of my family, I now know it appears to be the nature of the beast. There is a relatively new TV show on NBC called Parenthood. I have been able to watch episodes online at their website. I have made it a point to watch the show since one of the storylines is of a child newly dxed with Aspergers and the executive director and a writer for the show has a 13 year old with Aspergers. This show is not a feel good show for me, but has offered me a perspective. Two episodes in particular have made me feel like I am not just a raving loon, but a parent of an ASD child. One of the episodes, a cousin to the Aspergers child is thought to possibly be on the spectrum due to an obession that pops up. The mother of the ASD boy jumps into action, providing books and references to a doctor. At one point, this couple is almost excited that a sibling is going through the same thing. The sentiment is expressed that they didn't want to see another child with a disorder, but that they wanted someone else to connect with, to share and understand the journey, because you know what? You just cannot put it into words, you cannot explain it. Glimpses here and there are just that.

The other episode that offered me some thinking points involved the family trying to get all there other members involved in a awareness walk/fundraiser where they would compete as a team. The day of the race, only they end up showing up. Everyone is so involved in their own lives and their own issues, it just is too much for them. This reminded me of a few of the walks we have been to, where I watched some of the other families, who had created teams with matching t-shirts and all. It used to hurt, but now I just am glad to see people supporting others.

A line from this episode, uttered to a teenager with a broken heart, really struck a cord with me. I have edited to suit our situation:

"This is hard. You can't go through life allowing pain dictate how you behave. It's easy to sit here ... and wallow in your hurt feelings. It's hard to rise above it. This isn't about you... this isn't about [family member name], it's about _____" Blank filled in with Zach.

And there you have it. I try to show my support of my other family members and their own crisis and concerns. I am sure that they likely feel let down by me on some things too. But first and foremost, I worry about Zach and Sophia. Whatever's leftover, I divide up and give out. But right now, there isn't a lot left over.

And then there are those friends. People have quit coming around or calling. Some of it is natural life progression. Some of it is my incessant need to take any topic and find the degrees of separation between it and autism. I am so-o-o annoying. I sit there desiring so much for normalcy, or a mere glimpse of what life was like before autism entered the picture, and I somehow sit there rambling; always having to relay the latest research I read, the current state of legislature or insurance reform, the disappointments of the families I work with. It is a complete out of body experience; as I sit there watching myself ramble on, I yell at myself "No - don't go there. Ahhh geesh. Why'd you have to do that!" My brain is constantly processing our situation, the situation of other families on the spectrum, and all the knowledge I have taken in, and it sometimes seems to have to just come out of my mouth. It is no wonder that no one in the basic hemisphere wants wants anything to do with me right now.

Autism has helped make my social impairment worse with the the NTs (neurotypicals). Now those families in our boat with us? Sometimes I am treated like a rock star - they email me frequently, they want to talk to me, they ask me questions, I ramble on and on, and they seem to hang on my every word. The problem is, I can only seem to talk to them. I am traveling around this world in a bubble, the same bubble I am trying to break Zach out of.

I try not to isolate our family - we go to all the birthday parties, local events, local autism events. But I still feel isolated. But this isn't about me. It's about Sophia and Zach. So if it takes me being isolated to make sure my kids are not, that is the way it will be for now.

I am saddened by these disconnects we have faced. I wonder if there will be a time when I can reconnect with the world and those around us in a less profound way. As I told my sister that I wonder if the day will come where I don't have to chase kids around, changing diapers, making sure they don't get into trouble, she said with confidence, "Oh - it will come." I wondered if she said this with the ignorance of not thinking that we will never have that in our lives or if she really sees Zach progressing to that point. I didn't ask what she meant. I think I was afraid to know.

She called me later that day to say she saw a pilates class being offered close to my house. Would I be interested in going? I think of how I wish she could give Zach and hour of her time a week. But that's not being offered. I think of my stress level and how this may help. I take her up on the offer to check it out.