no apologies

 

“I was walking by a dry cleaner at 3am and there was a sign that said, “Sorry, we’re closed.” You don’t have to be sorry. It’s 3am and you’re a dry cleaner. It would be ridiculous for me to expect you to be open. I’m not gonna come by at 10 and say, “Hey, I was here at 3am and you guys were closed. Someone owes me an apology.”

~ Mitch Hedberg

I got a note from a mom this morning seeking my advice. Her son is going to play soccer in our town’s league and she had some concerns about how to best approach the director about her son’s special needs. I did my best to guide her based on my limited experience with such things.

I advised her to approach him openly and honestly. I suggested that she call him. E-mail, I said, is a great tool but a lot of the nuance can be lost in writing that might have been conveyed by a real conversation. It would allow him to ask questions in real time and hopefully really understand her son’s challenges.

I told her that I thought she should be careful not to hold back. I told her that while we all want to paint our kids in the best light, what will really help him in this situation is an honest appraisal of his challenges. I told her that when I do this sort of thing I write a list of topics and keep it in front of me while I talk on the phone. These things are emotional. It can be easy to get off track and hang up wishing you’d said more.

She wrote a lovely note back to me thanking me for my help. In the middle of the note was the following sentence:

I love your “this is who my kid is with no apologies” approach.

Wow.

So is that my approach?

Yeah, I guess that it is.

I’ve never named it before but sure, I’ll go with that.

I just don’t know how else to do it. I can’t imagine doing this any other way.

When Brooke was first diagnosed with autism, I was in a tailspin. For a brief time, my life was a cocktail of denial, anger, confusion and fear.

The overwhelming flavor in that cocktail was the fear. Fear that Brooke would be discriminated against. Fear that people would retreat from her. Fear that we wouldn’t know how to help her. Fear that she would be alone. Fear that the asinine doctor was right. Fear that people would limit their expectations of what she could achieve. Fear that we would. Fear that she would be treated differently.

So I didn’t say the word very much. Although it was our private key to a desperately needed understanding of so much of what our baby struggled with – what WE struggled with – I kept it hidden in my pocket.

I actually remember saying things like, “Isn’t it funny that Brooke responds so well to all of these strategies that they use with autistic kids? Cause, you know, she’s so NOT autistic. But hey, ain’t this ABA thing grand? Ain’t that picture schedule really helping her out?” Golly Gee whiz. I really wonder how it was that no one b!tch slapped me back then.

We put her into her wonderful integrated school and we began to watch her blossom in the care of people who KNEW how to approach her. Who GOT IT. And you know what? They WERE treating her differently. My big fear that people might turned into a desperate prayer that people WOULD.

They treated her with respect. They spoke in shorter sentences that she could understand. They went out of their way to include her when she disengaged. They repeated themselves when she needed them to. They gave her ample time to process their words and to respond. They took her out of the room when it became overwhelming. They broke tasks down into manageable pieces. They encouraged her. They lavished her with praise. They found ways to make her feel safe – the toughest thing of all. The thing I couldn’t always do.

I saw that when people learned about Brooke’s challenges, they were more patient and less judgmental. They rejoiced in achievements that they might not have recognized as such before. They helped us lovingly push her to realize her staggering potential. And they helped us find ways to make her feel safe.

Being open about Brooke’s autism freed me. And I believe that it freed her.

I described it to someone recently as a process much like that of coming out of the closet. I remember friends who had hidden their sexual orientation for years. In mixed company, their speech was always devoid of pronouns. They became proficient at saying ‘my friend’ or ‘my roommate’ in place of ‘my boyfriend’ or ‘girlfriend’ lest they give themselves away. I was always frustrated for them. It just looked like so much work.

And so it is with our world. My speech is peppered with the jargon of autism. I don’t typically get through a day without using the words in some manner or other. It would take energy to censor myself. And quite frankly, I don’t have a whole lot of energy left. So, yeah, I guess my approach is ‘this is my kid with no apologies.’

But there’s more to it, isn’t there?

We model behaviors for our kids all the time. Why do you think our little girls worry about their weight? Why do you think boys who grow up in abusive homes tend to abuse? Acorns don’t fall far. So if I go out of my way to maintain this ‘secret’ aren’t I essentially teaching Brooke to be ashamed of a big part of who she is?

I can’t do that. I won’t.

And so, while I do everything in my power to teach my baby girl how to get by, nay to THRIVE in our world, I am also hell bent on changing that world’s perception of autism. One person at a time if that’s what it takes. 

Seven weeks ago, Luau and I finally made an agonizing decision. It was a long time in coming and it was one of the hardest triggers we’ve ever had to pull. We put Brooke on the anti-anxiety drug, Celexa.

Someday maybe I’ll laugh at the irony of all of the anxiety caused by the decision about anti-anxiety meds. But not now. It’s not funny now.

All of the SSRIs (Selective Serotonin Reuptake Inhibitors) are prescribed off-label for children her age. The pharmaceutical companies don’t test them on young children. The doctors do.

I kept thinking about how vulnerable Brooke is. I worried about how little we really know about these wonder drugs. I thought of how draconian some of the old drugs seem to us now and I wondered what we will be saying about Celexa in twenty years. I agonized over brain elasticity. 

I wondered if we might be making a deal with the devil. Could we be trading in her anxiety for some other developmental disability (you know, because this whole autism thing just ain’t enough) or some other abnormality down the line?

Despite the fears, we finally came to the conclusion (after a LOT of time, a LOT of careful consideration, a LOT of effort to find non pharmaceutical solutions, and a LOT of trusted, thoughtful, insightful professional advice) that the risks of doing nothing were far greater than the risks of the medication.

And we did it.

Slowly. Carefully. With nearly paranoid vigilance.

And her life has changed.

Remarkably.

In seven weeks.

She remains on a laughably low dose, though I still find nothing about it laughable. It scares me too much to be funny.

But I could NOT let my baby miss out on her world because she was so desperately afraid of so many things in it. It was heartbreaking. Her entire little body would shake. She would cry. She would scream. She was terrified. And it was constant.

It’s not constant anymore.

From the beginning, Luau was comfortable talking about it. I wasn’t. I kept it quiet. I’m not sure exactly why. I just felt like I was supposed to keep it a secret. That I’d be betraying her somehow if I told people. Perhaps I feared people’s judgments. Maybe I feared my own.

But here’s the thing. I learned today that my approach is “this is who my kid is with no apologies.” So, here it is. The whole story.

And I am so incredibly proud of my kid.

And I’d say that I’m sorry that I didn’t tell you sooner, but nope. No apologies.

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13 thoughts on “no apologies

  1. “So if I go out of my way to maintain this ’secret’ aren’t I essentially teaching Brooke to be ashamed of a big part of who she is?”

    This was so powerful. And as usual, I’m a little choked up.

    When my niece Avery was born with Down Syndrome, I had a hard time telling a lot of people. I didn’t want the DS to define her. I wanted people to know her as a child first, as a child with DS… well, not first.

    It’s so tricky. I didn’t tell one woman because she’s a terrible gossip. And I knew she would lick her chops, and feed off it in a weird way, and everybody would know, and that’s all they would know.

    When I finally shared, she said to me, “Why didn’t you tell me?” And I knew she thought it was because I was ashamed.

    Maybe. I don’t know. It was all so new (a few weeks new) and we all wish we could do things differently.

    What I DO know for certain now–with more certainty can I can possibly convey–is that I NEVER want my “Aves” to be ashamed of who she is. Never. Never. Never. Never. (Tho’ I’m not naive enough to believe that will be the case but….)

    And since DS affects Avery right down to her chromosomes, it is integral to who she is.

    As you said so eloquently, by freeing myself I am teaching her to be free. That. Feels. So. Good.

  2. I wish I had known you were struggling with the decision, because I would have told you this: Celexa really, really does what it is said to do. I took it for many, many, many years. It helped me tremendously. It didn’t make me happy – it just made the no-big-deal things no-big-deal, just like they are for most people. It kept me from feeling like I was going to have a heart attack (literally) when I had to order pizza over the phone, then meet the delivery guy at the door. It toned down the ridiculous amount of panic I felt about every tiny thing.

    I really resisted Celexa myself. I kept trying natural, holistic and homeopathic remedies, and believing if they didn’t work for me, I didn’t truly have a panic and anxiety disorder. Now I can see that the failure of those mild aides indicated that I needed more help than can be found in a health food store.

    I’m glad Brooke is feeling better – and what perfect timing, with Kindergarten starting!

    xo

  3. I sometimes worry that I over-disclose about my son, and not always for good reasons. I want people to say, “Oh, so that’s why he’s behaving like that,” not “God, what a terrible mother she must be for him to behave like that.”

    But in the end, I agree that disclosure makes life better for our kids and for us.

    And yea for medications, and for your decision to share. It helps us all.

  4. Certainly a tough decision to make. I’m glad she’s doing so well with it. No doubt you will be seeing some major progress now that the anxiety is under control. Just in time for kindergarten!

  5. You know Jess that life is basically a “crap shot” but you and Luau have done a great job in slanting the odds in your favor. Don’t feel guilty about the “lost time” with Celexa. You and Luau were doing other things, more personal and very effective.

    I salute you guys again for the work that you have done together working with Brooke and especially your dedication to doing your almost daily write-ups. You have let the world into your soul and I’m sure you have encouraged many to open their eyes to different opportunities with their special children.

    I don’t have enough hats to take off for the both of you.

    Love,

    Bud

  6. This is a beautiful post. Good for you for “outing” yourself. Parents have to go with their own intuition, and all we can do is make decisions thoughtfully and go forward doing what we feel is right for our individual children.

    “This is my kid with no apologies.”

    I will take this with me.

    P.S. I went through a “it’s kind of like autism, but not” stage when Riley was little. Luckily, like you, no one slapped me.

  7. i’ve struggled to find a medication that works…but my plan is to keep trying. side-effects have been a problem, but nothing serious. if something helps, that’s a good thing, period, and i’m not willing to swear off meds until i’ve worked through quite a few of them. anyway, it’s nice that you were willing to take that risk, and it’s extremely nice that the result has been positive. i’ve been posting recently about some of the side-effect issues, but when meds help, it gives a person more power over their life…more control over events.

    yay for tiny little pills.

  8. No apologies necessary, Sweetheart. I think it’s wonderful to have gone this route and it obviously is working for Brooke and for all of you. I’m so very proud of you for trying!

  9. Honey, I did the “not autism” dance for a helluva long time, too. I think we all do.

    And guess what? Miss M was on Celexa. She improved incredibly in a very short amount of time.

    She was on for 6 months.

    She started her new school.

    And now she’s not anymore. Doesn’t need it.

    I am grateful and unapologetic. Just look at her.

    We do what we need to do.

    xo

  10. My dearest Jess, I’m so glad that you don’t apologize, because neither you nor Brooke has ANYTHING to apologize for. You are both beautiful, amazing, HARDWORKING, loving individuals who deserve nothing but support and respect. Once again, you are an inspiration.

  11. I am glad that you are so open about Brooke and what makes her how she is. I have a couple of medical conditions myself and I spend half my time fretting about how to hide them from other and the other just not caring and being open about it. I am on my second month of Celexa for my anxiety and it is truly wonderful. So far my anxiety is very controlled and I have not experienced any negative side effects such as other anti-depressants I tried. I have been learning that by not admitting to my illnesses I am encouraging ignorance about these illnesses. I have Irritable Bowel Syndrome, depression accompanied by anxiety, and TMJ as a result of an anti-depressant. I am glad that Celexa is working/or worked (since this is an old post) for Brooke, and thank you for helping me learn a bit more everyday that hiding my illnesses only increases the ignorance of others. Thank you Jess.

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