I tried to offer my friends with children some perspective: you worry about development a ton in your kids. You compare them on occasion. You may have young children mother regret- you know that 45 minutes you take to drink a cup of coffee and facebook your friends? I know a chunk of you feel bad mommy guilt for sticking the kids in front of TV during this time. You think you should have done something more engaging with your child, that because of this regular indulgence you have taken (that when dealing with your kids all day, may be the only thing keeping you sane) in some level of consciousness makes you feel that he might not take that AP class one day resulting in community college over that private school, or worse, perhaps much worse, your nightmare, your child doling out fries and burgers at MCDs or BK. Oh the horror!!
Well guess what, your nightmare is my dream. If Zach can one day communicate and have the self care skills to manage a job at a fast food restaurant, that would be a major victory. Now can he do better than that? I am not going to lie, I am shooting for the stars; I want that college education and professional job for him. I want as much that is normal to me for him as possible. Why? Is it social status or money? Not really. My two biggest concerns for Zach: I desperately want to relate/connect with him and I want to make sure he is safe and capable of defending himself in a world that can be hostile.
Anything is possible. (Hope) What is going to be is such a mystery. (Fear)
I am a girl with a plan. I can take mystery to some extent, but I want to feel like I have some control over my children's future. With Zach, I feel like it is much harder to feel like I am making that positive contribution. Stress. Every decision we make now feels like it might impact the quality of his life to such an extent that it is the most amount of pressure I have ever felt. So I have written down some of the things that help me to manage through my day without anti-depressants (at least for now), without anti-anxiety med (again, at lest for now), and without turning a complete nervous breakdown (although little mini ones are allowed.)
So I have begun to write a series to help me establish in my upper conscience what is helpful and what isn't: what I am thankful for, what helps get me through the day
Today, my first topic is the gift of time, the #1 offering someone can make to help us out. The gift of time comes in a couple of different forms. Simple playdates with my kids is a really big one. Having us over for dinner is another. Coming to the social events we host is yet another. Calling me up and making me leave the house to do something fun is right up there too.
Playdates with friends is critically important to us - some with kids who are diagnosed, some who are not.
I have a friend whose son is doing well and has a smile that lights up the room. She has always been so gracious to me and my husband, inviting us for playdates or excursions. This woman always is in action , thinking of her son and his diagnosis, referring to professionals, other families, taking classes, signing up for programs, and in the free time, she works with her son. He has made remarkable progress. She is a single parent with no college education, yet I have seen her efforts and she is as intelligent in her decisions as someone with a PhD in child psychology could be. She has impressed me for sure and given me the desire to fight and not care what others think.
Another friend has a son 6 months younger than Zach. They have gone all out in their interventions, biomedical and therapy, and there son recently tested as having no deviation in skills from typical peers. This family has scored a victory for sure, but has also shown me, once autism enters the picture, there is always this fear that doesn't go away. Although he is so capable, Mom cannot get over that he could once again regress. She also shows little fear when it comes to keeping her family operating in this world. She constantly challenges her family taking them out into public spaces with strangers. She is a fierce mother for sure!
Another friend has an older non-verbal son with an ASD. She is stays in contact and frequently tries to get me out of my shell. She is one of the most positive people I have ever met and I am hoping that one day some of that will rub off on me. In the face of adversity, she keeps on smiling and I love that about her. She invites our family over to dine or swim with her and her son. She tempts me with social occasions that I tend to shy away from.
There are those friends who don't have children with an ASD - but keep us in their social repertoire nonetheless. I have a friend who recently had us up to a camp they rented in the Thousand Islands region - and the kids loved it. And another friend with three beautiful daughters who has watched Sophie on occasion, however, recently broke my heart by announcing that they are moving to Albany.
There are those of you who read and comment on my blog, possibly offended at times, but show support nonetheless. There are my facebook friends of all varieties that chat with me and comment on my status.
Some members of Steve's and my family have made some efforts too. It is hard for some because they live far away. Others have disappointed, but I love them anyhow. I am always amazed at how hurt I am when my family doesn't show up to events that I host. I think that I am sometimes oversensitive. I have a hard time shrugging these things off. But I think I have come to some realization that my priorities in life and theirs are different, and I need to find a way, put up some boundaries, so that our differences don't cause us to totally be toxic to one another. Some people would say to cut these people out of my life, but the fact is, I doubt I ever will. It's not my personality. I love them and need to at least know of their journey through life although we might not be intimate the way I would like.
A neighbor talked to me the other night for an hour. She was so sweet and we laughed. She does not know of Zach's dx. She is busy with four kids of her own. She keeps on pushing me to go out running with her and a few other women in the neighborhood. I know she is right. Trying to make it fit in the schedule is another topic. I like that she hounds me about this.
There are likely several other items I could mention, but I think you get the drift. Acknowledging my children's or my presence is a gift more valuable to us than just about anything else. Thanks to all of you who took a moment of time out of your busy schedules to think of us, send us a note, give us a call, send an email, make a comment, etc let us know that you care.
This experience has taught me this:
“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
Zach has given me the courage to deal with things I normally would have avoided all together: take on bureaucracy, ask for help, stand up for what I know is right. I am so grateful for those of you on Team Zach which keep me going on days when I think I have nothing left.