September 13, 2009

Reactions

It's been a few days since the formal diagnosis and I've been thinking a lot about what that means for us. The diagnosis wasn't a surprise and in truth I've had a couple of months to come to terms with things. Still, the words are on paper now. It is official: my son has autism.

Strangely enough, I feel relieved. The evaluation process is behind us. Though I would hardly say that the worst part is over, we know what we are dealing with. We have a doctor who is on our team and will help us move forward. There is so much we cannot predict about the future that just having something concrete (as concrete as an ASD diagnosis can be), is reassuring.

I also feel like my "mommy gut" has been validated. For so long, people told me "Moe is just moving at his own pace" or "he's just a late bloomer." But that didn't seem right to me. I felt like it was more than that, though I desperately wanted to believe that I was just being a worrying mother, overreacting to every behavior that was in some way different from the other toddlers around us. If there is a lesson in this, it is that I am The Mommy. I will trust myself.

Which brings me to my next reaction: action mode. Who do I call? What do I read? What groups do I join? I must fax, call, email the right people; get the new therapy plan in place; make appointments, attend lectures and watch videos. I have immersed myself in reading about getting coverage from Early Start and working with insurance. I am reading blogs. Did I mention that I don't even have the copy of the written report yet? I am all Autism, all the time. I do realize that this is not healthy, and "forced" myself to watch a few episodes of Project Runway. Trashy TV is now a required therapy. (For me, of course, not for Moe.)

As I write this, it is obvious that I am using the above activity to keep from thinking about how sad all of this is. Because I am so, so sad. This wasn't how it was supposed to be. Hasn't my family been through enough? Without a good sense of what Moe's future will be like, I haven't quite let go of my hopes and dreams for him, (which include, but are not limited to: a degree from Cal or, if he insists, an Ivy; a fabulous career as an architect or something equally creative yet respectable; and a lovely wife or partner of his choosing). Will I need to adjust those dreams? Is everything going to be hard for him? For me?

And there's Jelly Belly. Beautiful, perfect, blue-eyed Jelly. Will I have the energy to give her the attention she deserves? If I am so focused on Moe, will she have to find other ways to get my attention? And will Jeff and I have the strength to devote to each other at the end of the day? Will I ever get a life of my own back and am I a horrible mom for even thinking about myself?

This hardly scratches the surface. There is also guilt, anger, frustration, grief, horror, pain, disbelief, denial, did I mention guilt?, blame, fear, and exhaustion. But - and I cannot say this loud enough - there is LOVE. I love my Moe as much as any mother has ever loved her son and nothing will ever take that away.

5 comments:

  1. Jen,

    The way you are able to articulate your feelings shares with all of us the love and devotion you have for your children. You are a wonderful Mom, and you will be able to handle it, and you will be a wonderful mother to your daughter, and a great wife to your husband. You are your Mothers child, and you learned from a great woman. All the fears and sadness you feel can are all normal and healthy. I have a number of friends who's grand children are autistic and are a little further down the road than you are. I'd be happy to share their names and numbers with you if you'd like to chat with their daughters...also, the Mom's are about your age and have other children as well. Just know that we hope you'll reach out to any of us if there's anything we can do to make your journey an easier one.

    Much love,
    El

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  2. Jennifer,
    What a wonderful message today. With every word you write, I feel like I am reliving a very similar time in my life. You are doing awesome. You are doing the right thing. Even when you decide to switch thing up and do something different, it will be the right thing. Keep listening to that gut of yours.
    Best,
    Vanessa

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  3. Your feelings are absolutely valid. Your words have much merit. It does help when someone FINALLY believes you. (My mom has a friend who has a son with autism. The friend informed my mom that the J-man isn't really autistic. Thanks friend!)

    The J-man's therapies didn't actually change given his diagnosis. He was already going to all those things anyway. I don't know if that made it harder (how could they not see it?) or easier (well, at least we don't have to decide RIGHT NOW what to do next).

    Thinking of you...

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  4. Jen,
    You are a beautiful person and such a wonderful mother. The tears stream down my face after reading your pages beginning to end. I enjoyed the entry about your diary and had to laugh, I could never be frank in my diary because I was sure that someday someone was going to find it and read it! I guess I could have been blogging all along. But, I do appreciate the honesty you put on the page. Parenting is hard! And it really doesn't seem fair that a mother would have this added to her plate, it seems full enough as it is. Wesley is one lucky boy to have such a dedicated and loving mom and family. And you are lucky to have him. He is such a great kid!! These past months have felt overwhelming for me so I cannot even begin to imagine how you have been feeling. You are doing a great thing with this blog and we are reading and we are with you in spirit. You will inspire, lead and encourage us all with your words and the amazing way in which you are dealing. Thank you for sharing with us. I will be reading...
    Shauna

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  5. Jen,

    The first time we met, you were in your mom's loving arms at the ripe old age of 6 months! It is daunting to see you now as a mom yourself.

    I am touched by the way you articulate your feelings and speak so honestly. The sadness and the fear you feel are normal, healthy and a testiment to your kind heart. You are a wonderful mom and your love and concern for your children show!

    As I read your posts I think to myself how strong and brave you are.... and how lucky we are to have access into such a private, loving place. You have found a way to help you cope with your stress and fear and at the same time, to educate us all. Thank you for that! Keep on writing, sharing and choosing hope.

    Lots of love, Mar

    ReplyDelete

I love comments! Respectful disagreement always encouraged.

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