“Is there anything else the preschool teacher needs to be aware of?” I was on the phone with the Special Education director for preschools in our district. We’d been over Abby’s hearing and health, and are planning on her starting at the school this week. Hopefully. “Uhm, yes. I’m actually sitting in the parking lot of her pediatrician’s office. We just had another appointment. We think Abby might have autism too.”
Nailed it.
I congratulated myself for making it through that sentence without so much as my voice catching. I did not cry. I stated it as it is: we don’t know, but probably.
“Are you okay?” Damn you. This question caught me off guard. My voice trembled as I began to watch my clinical matter-of-factness crumble. “Do I need to be? I mean…yes… I mean…no. No I’m not. I’m not okay with this. But I will be. Give me six or seven years…” I think I took her back by being honest. By not spouting out the first platitude that came to me. I took myself back, too.
I feel like I shouldn’t be talking about this, that I shouldn’t be sad about this, that I shouldn’t even so much as be processing this until the diagnosis is written on the paper. I feel like I should suspend all of that ache until we have some concrete answers. It makes sense, right? I mean, there’s still the possibility that all of her ‘red flags’ can be explained away with something else. I hope so. But I don’t think so. Even if they are, we’re still dealing with the reality that my three year old is pretty much silent. She makes very little sounds. My husband and I remarked once how we were jealous of our friend’s five month old baby. She babbled. She responded to talking with coos. Abby is like a portrait. As beautiful as anything I’ve ever seen, but silent. A world of wonder hidden under seemingly perfect brush strokes. We hear her voice the most when she cries. It’s the cutest little voice. It has the same tonal quality of her father’s, but expressed through the vocal chords of a little girl. I long to hear that voice say “Mom” or even yell at me in protest. I ache to hear her say anything at all.
Maybe she will one day. Maybe she won’t. Either way, the process of understanding has started, and my grief is there no matter how I try to talk myself out of it. It’s preparatory. We found out my father was going to pass away 8 weeks before he finally did. Those eight weeks felt as though we were suspended in our grief, that we couldn’t mourn the living. I did though. I cried myself to sleep a lot and tried to take in everything that I was seeing so my thirteen year old brain wouldn’t forget. When he did pass, it was hard. It was very hard. But nowhere near as hard as it would have been had we all not spent the prior two months processing. It didn’t have to come all at once. It’s kind of like I’m doing now. Maybe she won’t be diagnosed with autism, maybe we’re dealing with something else entirely. Maybe it’s just the Down syndrome. Or maybe she’ll just give up the mime-act and start talking out of nowhere. At the very least, when I get to the point of knowing, I will be okay. I will have done the work beforehand to manage the weight of the day.
Or maybe I won’t be okay. That’s fine, too. It’s like I’ve said to countless other people but refuse to allow for myself: whatever you’re feeling is okay. It’s right. There is no right or wrong way to get through this. Allow yourself to feel it.
So I am. Is it dark and heavy all of the time? Of course not. I mean, have you seen Abby? She doesn’t give you a lot of space to be super sad. In her silence, she is golden. Her smile and a tap on her chin that means I will spend the next half hour singing songs while she mimes the actions. Her giggle that reminds me that her voice is in there. And the feelings that come when she’s in my arms- that even as a writer I am at a loss for words to describe. Sometimes, words just are inadequate.
Most of the time, really.
Lexi Mag 
Lexi, you have this amazing way of making us see what you see and feel what you feel when you write these posts. Rarely do I say to a person that I understand how they feel, but I do. We walk this journey together. I remember writing the words “I just wish my son could say Mama, I love you one time” 6 years ago when he was 3. And guess what? Three years later he did. Hugs to you my friend. You keep feeling and dealing however you see fit for you to get through this. Though we have never met, I think you are amazing.
As always, I’m in awe of the honesty that comes through your writing. They’re like explosions of love, but in a positive and uplifting way, if you know what I mean (I think you know exactly what I mean).
And you’re right. NO ONE should make your feelings wrong. You’re allowed to feel them,take them out and examine them, try on different ones before you settle on what feels most comfortable and least itchy on any given day. It’s right because it’s living life authentically.
I did the same pre-grief stuff before my son was diagnosed with autism. So much so, that the actual day the diagnosis was formally made was not so terrible. Lovely Abby will undoubtedly thrive just as she should, and all of your virtual friends here are ready to support you til you can say with certainty that you are okay. Just seems like so much for one tiny girl to have to navigate. Lucky she has her family to help her. Love, hugs, and peace, lots of peace.
You have the right to feel any way you want. You own your feelings, and damn those who have anything bad to say about that! I love your posts. I don’t always comment, usually just stalk, but always love them! ❤
If only we could take our own advice, right? I teared up just reading this,remembering when I couldn’t say that Cullen has Autism without breaking into awkward crying. It doesn’t matter that you have already been there with another child. You still get to feel however and whatever you want about the possibility with Abby. I think you are awesome for sharing publicly everything you are going through.
(((hugs))) Lex. Please please take your own advice. You have had so much to handle recently. Allow yourself to feel what you need to and handle shit how you need to.
I’ve so been there! Hang in there Lexi!
Sometimes no matter how you put it or what is said ….. life just doesn’t seem very fair. (Sad smile)
You have every right to feel how you how you want. This was such an achingly beautiful and raw post, Lexi. Abby will be okay because she has a great set of parents and three wonderful brothers backing her up. Much love to all of you.
Beautiful.
I won’t tell you anything you don’t already know. But, that sweet girl is communicating volumes more with her nonverbal actions so much more than many other kids do with encyclopedic spoken vocabularies. If you giver her as many communication tools as possible, she will blow you away. Of THAT I am certain.
I won’t lie and tell you that she will speak one day. I can’t possibly know that. And I won’t tell you that it gets less painful. It just gets…different. And, if she doesn’t ever talk? You and she will learn beautiful, rich ways of sharing communication together which is more nuanced and delicious than you could imagine. Much love and many hugs.
It is 100% okay to be feeling what your feeling. At least I hope so, because I’m going through the same thing myself, that being that my second son might also have autism, and I don’t think I’ve ever been this upset about anything, even when I found out my first son had it. and I think you hit it on the nail when you talked about just knowing. I swear if I could just know for sure I’d be able to move on to the next thing, whatever that is.
Thank you so much for writing this blog. It’s insane how much it helps to just know that I’m not alone, so thanks. 🙂
I fell apart in a BIG way when our 6 year-old with Down syndrome was diagnosed with autism this past March. It wasn’t pretty. I turned to alcohol to numb the grief. Hadn’t I already grieved for this child when I found out he was going to be born with Down syndrome? And now I had to grieve again. Knowing that the dreams I had for my son with Down syndrome would also not be realized. I’ve put on 70 lbs. I’m a shadow of my former self. But I’m sober now and I’ve JUST turned a corner about a week ago where I realized that I was so sick of hating myself, so sick of hating my appearance, so sick of hating everything about my life. And now I’m reaching a better place. We’d pretty much known that Jack was also autistic in January, but the final confirmation didn’t come until March. Essentially, it’s taken me 9 months to pick myself up, dust myself off, and move ahead. I still have 65 lbs to lose, but at least now I’ve deemed myself worthy of losing the weight; of feeling beautiful again. Jack is our only child and I wonder how so much managed to go so wrong. I know life isn’t fair, but why does it have to be so unbelievably unfair to us?! Hugs. I know what you’re going through.
My daughter who was diagnosed with Autism right before her third birthday had no sounds at Abby’s age either. She was so quiet. We started her with Speech at 2.5. She started a special needs preschool the day after she turned three. Four months later, the language started coming in. She will be 5 next month and talks and talks and talks now. I think Abby being around peers who speak might pull it out of her. I pray it does anyway. Every mother deserves to hear “Mommy, I love you.” I have all the faith that you will hear her sweet voice say that and much more. I remember people saying “Watch what you wish for. Once she starts talking, you’ll want her to shut up.” I remember thinking “Never! Never would I want her to shut up.” I’m sure they were well meaning but I thought it was so insensitive and ignorant. I have never wished her silent since she started speaking. I still remember thinking she would never speak and how much that thought tore me apart. I will never regret the fact that my child can speak and I will never wish her to be quiet. It’s music to my ears.
Getting to sit on the floor with her and sing songs while she tapped her chin meant the world to me. I love her with all my heart. I hope that you find answers soon.
All I can do is send up a prayer and a virtual hug. g
Lexi,
As i read your post, my sight starts to get blurry, it’s difficult to read.. then, it starts to feel difficult to swallow, just like there’s a lump on my throat..
What parents like us could do is take is slowly, one step at a time.. take what only we can take one day at a time, until we get the feeling that it has already sink in. Let your own phasing help you through it, we all have our own phasing.
I love your will, your strength and your guts for being there for us here, in our own comfort zones, because you make things more bearable for us through sharing yours and your family’s feelings with us. By doing so, Abby and your family are more loved.
It is alright to cry out if feels so, it feels good for the heart. And remember, God listens to the cry of our hearts. Keep the faith.
Your words were a major comfort to me today.
Do not Despair!
Her words Will come…
Lexi, while I’m fairly new to your blog your honesty gives me the courage to be that honest about my own life. My husband left me this last Saturday claiming he was wanting to separate “for a while”, and it’s been difficult to grieve the loss of my husband, especially not knowing when/if he’s coming back. I’ve had trouble putting what I’m really feeling about it to words, and seeing you be so candid about something that is tearing you up helps so much. We will all get through these tough things, and even if Abby really does have autism I know that you will take this as another opportunity to persevere. If this really is the beginning of the end of my marriage, I’ll take this as a launchpad down a different path that will lead to different adventures than I had originally planned. In the midst of doing your best to take care of your kids remember to take care of you too. Even if you can’t control how everything else is going, you can control how you’re taking care of yourself. Someone had to remind me of that this week… well a few someones had to do it before it sunk in but nonetheless it’s important. Hang in there dude, you’ve got a lot of people on the internet and in your non-internet life pulling for you.
I hate the not talking part of Max’s dual dx. At 4 1/2, the only thing Max says is ‘da’ – not even ‘daddy’ anymore. He did at one time. And not signing doesn’t help. Just yesterday he was whining/crying and my hubby and I spent 5 minutes moving his chair, moving his leg, getting him a new drink, etc, etc. Finally, he moved his plate just a little to the left, and was fine. We laughed it off, but sheesh, it’s exhausting trying to guess your kid’s every freaking need! I soooo feel your pain.
So sad & so bittersweet. She is beautiful & so is your writing. I wish you all the best along this journey.
Lexi, I am just catching up on all of your blog posts, so I’m only up to September, even though its February. Yeah, I suck at being a friend, even when all I need to do is read your blog. And I still can’t believe that you lived on the east coast for 2 months, and we never saw each other. Wow, i totally suck rocks, huh? Anyway, I wanted to tell you that the picture of Abby at the end of the post is just absolutely breathtakingly beautiful, as is the post itself. I still have to catch up on the rest of your posts to find out what’s going on with Abby right now, but I am sure that you’ve been able to handle what you needed to. Just like you have everything else.