Wednesday, October 26, 2011
The value of a life had caused me to become mute. Oh, I had ideas, I had thoughts, we had experiences, of failure and joy, that could be shared. But I wasn't really sure what the value of that was. I wasn't sure what the value of sharing some of our intimate experiences was to myself, or to others. Most importantly I wasn't sure what it meant to Zach.
I, by most accounts, am not a fun person. That does not mean I don't have a sense of humor. Indeed, it is one of the things that helps me get through the day some days. However, if you want someone who is going to make you feel good or show you a good time, be the life of the party - yeah, well, what can I say? Not it.
I am analytical- seeing what can go wrong, the faults, the possibilities of failure. That is what likely drew me to engineering. This does not mean I am a negative person- I do not believe all is lost, that all people stink, that everything is ending and all is hopeless. I believe not all is at is appears, that details matter, that fine tuning can make big changes, that we shouldn't accept something as fact because it is convenient, as so often we all do. I want to build positive changes, I want to create things that have yet to be seen, I want to influence others to see their potential. I don't think that makes me negative at all. But fun? Yeah, well, not really.
I also believe that as much as I want to influence others in an effort to create positive change, I also accept that there are those beyond my reach - that my take on life doesn't jive with theirs. There are those who do not like what I do. There are those insulted by my posts. There are those who think that I am exploiting Zachary as I share our lives' story.
My sister recently pointed out that I have always been a person who who put herself out there. My mother, nearly 40 years my senior has never seen the value in discussing personal issues, as was the norm for her generation. My siblings, considerably older than myself vary in this capacity but generally tend to be more private in their personal dealings. Be assured, you do not see the whole picture of my family, some things are still left private, while others we feel need to be expressed.
I have contemplated over and over why I started this blog and what it has become, and what I want it to be. I initially was taking those snapshots of life in an effort to preserve memories - I used to take monthly shots of the kids and highlight the latest developmental milestones reached or activities involved in. Of course, this could have stayed that way, mostly facts and joy. But the milestones weren't being reached. What was I going to write about?
The participation in playdates and activities continued for one, but not the other. There was something wrong, there were these physical illness symptoms, requests for help from professionals, who gave no answers initially, and a bunch of people I deeply loved who had no guidance to offer, they had not been down this path before.
I realized that there were still milestones, just not ones as predicted for those who are typical. I felt alone especially when I would share our joys of small steps of achievement and people sometimes laughed. Or worse, they looked disappointed. I started to feel an overwhelming sense of being on a ship out to sea with no crew- a disconnect from the suburban upper middle class that I had long been associated with. No longer could I call a friend and say "Hey - does your kid do this weird thing?" only to be reassured that yes indeed, their kid did, or no, but they know so and so who did that.
I cannot even begin to tell you what this isolation feels like. Even amongst those in the special needs community - when you have a child unable to easily communicate this puts you into a minority of minorities. I have read varying reports - the statistics read that 25-30% of kids with autism are non-verbal. While others are worried about if their child can hold a socially appropriate, pragmatically correct conversation, I am hoping that when Zach is ill, that he can somehow indicate what is hurting. Both real concerns - but a distinct level of difference.
Something in life I have realized recently: you cannot make all the people happy any of the time. I have realized that when I share Zach's wins in life; his accomplishments, his development, there are those who think I am being a braggart. Furthermore, when I share Zach's needs and deviations, they think I am being a attention seeking, looking for pity, demeaning Zach whiner. The fact is - sometimes I do like to brag about my beautiful boy. And sometimes I do want someone to say: "Hey - sounds tough, I care, I'm here for you guys, we're listening." What I don't expect is for anyone to go out of there way to make our lives better - we are trying to do that for ourselves. And most importantly, what I hope to do for others is to let them know if they are on a similar path - those feelings, of regret, sorrow, grief, fear as well as joy, acceptance, anger, and fight are part of this journey with special needs. I will not apologize for my feelings. I will not apologize for trying to reach out to others who many be experiencing the same thing.
I am a better person because of the connections I have made from writing and reading about the journey of special needs. I have read blog posts of others that made me cry because they wrote exactly what I was feeling - something I might not have been able to express suddenly in front of my eyes, most likely from another mother, sharing an intimate piece of herself. They made me feel so much less alone. Sometimes they gave me practical information on strategies of working with Zach.
And when once in awhile someone not on our path makes some effort to show support when we are struggling - I cannot tell you what that means to our family. Those are the moments that help me regain some faith when I so often question why certain things are happening.
I am being true to myself by continuing this blog. I am better for it and I know it helps me be a better mother. I will likely offend, turn off, or otherwise irritate some. It is not my intention to hurt anyone, especially my children. And I feel that I am doing far more good here than any bad. I also have the support of my husband, who also has our children's best interest at heart.
For those who will continue to be upset by my blog, I feel that we have likely never had your support in the first place, and I ask that you not read it, for your own and our own good. I sometimes wonder if the people I upset likely have some lingering issues in their own lifethat may require some introspection. My silence will not make those go away.
I have always taken heat over my easy expression of things some think are better left unsaid. I expect those who have no regard for me or my families interests to attack when they don't like what I have said. I have hoped that those who love us to to respectfully express themselves if they are concerned about what I write, and some have.
Zach's autism is not something I am ashamed of. My discussion of our journey is to help bring about awareness of what one child's life looks like that has this diagnosis - because each case, each child is different from another. I read once somewhere: "We are all united by our shared humanity. But we are divided by our individuality." I feel that by talking about those differences, we can alleviate some of the fear of the unknown that frequently creates problems.
I wish everyone peace in this world. And I know nearly everyone, even those who don't like my blog, want to see Zach be happy. In an effort to extend to you what having the support of people not affected by autism can do for those who are - I would like to share two videos that have meant a lot to people with kids with ASD.
Posted by Leanne Morphet at 3:57 PM