The name "Ezra" means aid or help. Is the title of your memoir a reflection of the idea that in seeing your son for who he is-helped you to see life how it really is. In other words, happiness and happy endings aren't guaranteed-one has to make them happen.
Um, yeah, sure, of course. That's exactly what I meant when I titled it because, yeah sure, I knew my son's name meant aid. Ha. In all seriousness, that IS what I meant, but I must admit I didn't know until just now that this was the meaning of 'Ezra.' I thought it meant 'messenger', which also works nicely for who he is and this idea that he's taught me so much about what I need to see in the world. And, yes, I named it Seeing Ezra because the memoir is very much about my journey of trying to see my son clearly amid all that autism noise, and in trying to see him, I was also trying to see myself. And, yes, I don't really believe in happy endings. This is something I try to do in my work -- I'm interested in the meta-narratives in our culture, and for the special needs child that narrative is that some non-special need parent finds the answer and cures them. It's a bunch of bull, you know? The truth is always more hidden, and I'm always most interested in finding it.
Being a memoir-the story is told from your perspective. What does your family think about it? Do they view some of the(family) experiences you write about in the same way? Were they aware of the turmoil you were feeling?
So, I should say that I let Michael read it before it was published. He is totally on board and agrees for the most part with my interpretation. Most of my other family members weren't aware of the turmoil because I tend to be good at putting a face to the world.
Your story is deeply personal-raw even at times. After reading your finished work, were you surprised by anything you had written? Did you learn more about yourself in the writing of it-or in the reading?
Absolutely. You know, I can't even read it now. It's too painful for me to go back and feel what I was feeling for so long. I love this about writing -- I will always get more honest with myself when I write, whereas in real life it's easy to stay in denial. I hate that word: denial. I don't think there's anything wrong with needing to stay away from some of that rawness in our daily lives, reserving the pain for when we can set aside time for it. This is what my writing does for me, I guess. I'm not sure if I'm really answering your questions: I guess, yes, I'm still surprised by how painful some of this has been, and yet I'm also so glad that I have the capacity to experience those intense feelings. It makes life more...alive.
At the end of the book-it seems that you have come to many realizations about your son as well as yourself. How has this changed your life-your families life? What is the most important thing you have learned. What do you most want your readers to understand from your experiences?
I'm so thankful as a parent to have had Ezra first because I think it's helped me immensely in parenting Griffin. I really understand that the things I might otherwise think were super important just aren't. For instance - how much my kids play video games or whether they eat all organic food or play with plastic toys. Who cares? What matters is my relationship with my children, whether I can take responsibility for myself, whether they feel worthwhile in the world, feel like they are good and perfect as they are. I most want my readers to understand that they aren't alone, that we are just human beings trying to raise other human beings, that our children aren't ours - they belong to themselves and ultimately to the world.
How old is Ezra now and how is he doing? Is he eating a wider selection of foods or is this an area that is still an issue?
Ezra is 8. He's doing well, still at that wonderful school that gives him support and therapies throughout the day, but in ways that are fun for him. He's also getting music therapy there, which is so fun for him. He's answering most questions (still not why - cause and effect is their next big push with him at his school), and is much more communicative in general. He's been making up stories with his stuffed animals and narrating them. He's good! You know how this is - so hard to say. Of course I believe he's doing great. He's always developing and growing and thrilling us. But then there are those times we feel that grief about what will be. My most honest answer to this question is: I don't know. He's happy and thriving emotionally and cognitively and physically. This is enough, maybe. The eating: ugh! It's still pretty bad. They've gotten him to eat a few more things at school - bananas, fruit leather, applesauce, and lettuce from the garden. He drinks his milk now from a straw and will drink water (and chews ice, though - hello, pica). So, yes, still an issue.
How much time has elapsed since finishing the book and its publication?
I guess a good three years since I finished when he was 5 and now he's 8.
In the closing chapter, you focus on your relationship with Ezra, but I'm sure readers will wonder, as I did, how your relationship with your husband is, if the two of you were able to overcome some of the issues you were struggling with, as well as how Griffin and Ezra's relationship has continued to grow and evolve.
Michael and I are great friends and co-parents, but we are divorced. We both have discussed the possibility that we might have still made it somehow, but now I'm with someone else, and I'm happy. There's still some sadness about it of course. If I could have my way I would somehow have him and my new partner with me all the time, but...obviously, that isn't going to happen. Something cool, though, is my new partner has two kids - 8 and 4 - and that's been such a great addition to my kids' lives. They love and sort of protect Ezra (especially the older one, a girl), and I love that he is surrounded by more typical children all the time. For Griffin, it means he gets to have some typical siblings to play with, which is so nice for him. That said, Griffin and Ezra absolutely adore each other. They have their own special way of playing. Sometimes I have no idea what Ezra wants, so I ask Griffin, and he says, "Oh, yeah, he wants xyz," like it's the most obvious thing in the world. They have an unspoken knowledge of one another. And Ezra loves Griffin so much - I'd say he's possibly his favorite person in the world. He always needs to know where he is and prefers to be with him as much as possible. It's so lovely.
One thing that seems clear in the memoir is that you faced a lot of judgments from people (something all special needs parents can deal with). Even where we should be at least sympathetic to other parents' struggles, it feels like the judgment from other special needs parents can be harsher than those who don't face the same obstacles. What words of advice would you offer to parents new to this world and the online community, specifically?
That's such a good point and such a hard question too. I think you're right about special needs parents, and I would guess it's because we are so often stumbling and grasping onto things. Add to that the online world where most everyone treats each other like garbage (I think of it the same way as when people are in their cars). So, I guess the only words of advice I have are to be careful out there. Know that this is true about much of the special needs world. Finding friends in the special needs world is so important, but it definitely takes a while to filter out the people who will make you feel bad. I have some friends from the online worlds I joined who I think are fantastic, but my closest friends are in real life, from Ezra's school.