Purge

Mothering my daughter at age six, is a lot like mothering a child who is may be two or three, only...

She's bigger. And stronger. And she knows better how to push my buttons.

We still childproof our home and cannot leave open-mouthed cups around because it's not even a question of IF she will spill them, it's when. Generally, to be on the safe side, we cannot leave anything of importance within reach or she will destroy it and I am often calming an upset Rainer whose art project or toy or what-have-you has been ruined or broken or just taken. Given the size of our house, I often find myself at a loss for high places where I can set things down. She just doesn't have that pause-think-edit button that other kids her age (or younger) have. Unless she is occupied you pretty much have to either be on alert, or keep your things protected.

You should see it if something glass gets broken, or if a spill happens. She doesn't get that you don't then play in the glass or milk. In fact, she is drawn to explore. Compelled like a moth to a flame. Speaking of being compelled, my gal has her certain obsessions and they are a bitch to break. She will demand something incessantly, and if you give in without first asking her to do something (so that it seems like it was your idea rather than giving consent in response to unsavory behavior), well, then, be prepared for a lot more unsavory behavior. Our life is like a behavior therapy session in constant motion.

Until, frankly, it's not. I only have so much patience in a given week, and sometimes I just need a break. Congratulations, here's (an embarrassing amount of time on) your eReader! 

I have to constantly be on the lookout when we are out in public that she not pick up something unsavory (there have been a few close and DISGUSTING calls at various parks where people apparently do some lascivious things under the cover of dark), and worse, put it into her mouth.

Until very recently, I have had to keep one hand, at least, physically on her person at ALL times in public or else she would run off. Imagine checking out library books like this, or writing a check. Imagine trying to push a cart (who am I kidding, I still make her ride in it), or carry just about anything (especially in addition to holding onto your other young child) It's getting better though I need to generally keep her within grabbing distance, but if we are going someplace where she is familiar with the routine and expectations--like dropping Rainer off at school--I can let her go a good ten feet in front of me. Close enough that I can jog up to her should she veer off course.

She will generally not listen (can't listen) to directions in public places. She is the ultimate "squirrel!" girl, meaning anything at any time can be a distraction. Shiny penny!

Conversely, anything at any time can be a cause for dropping to the ground, moaning, and refusing to get up. 

And I mean REFUSING. 

I used to be able to pick her up and essentially manhandle her where we needed to go, but those days are long over. Thankfully, about a year ago I used some good sense and my foreshadowing skills and we started working with a behavior therapist with this issue so we are cracking the code a little bit and can sometimes with the assistance of multiple motivators (think: bribes), choices, and first/then language, we can get her going again. But sometimes. We just can't. I have stood pleading outside of Rainer's classroom for many long minutes while she has rolled on the dusty floor refusing to stand up, let alone walk. She WILL walk again, but only when she is good and ready. (This feel especially intense and urgent if a. other people are around (I mean, my skin has thickened over the years, but I'm human.), b. we have someplace to be, or c. I need to go to the bathroom (Hey! Mother nature calls!).

I spend my days with Georgia negotiating almost every single move we need to make. From putting on her coat and shoes--she needs help with virtually all self-help care and though she has recently started putting on her own pants (on occasion), I cannot send her to her room to get dressed. I cannot even send her to her room to pick out her clothes. Most things Georgia does in her day requires physical assists. She will follow one, and occasionally two, step directions, but usually I need to ask multiple times, I need to physically take her away from whatever she is doing, and I often need to manually walk her through the motions of the request.

I have often felt like a puppet master playing with my toy day to day, but this puppet master holds virtually no "power" over her puppet. In fact, the puppet has often seemed to hold all the power.

I feel really shitty writing that.

1. It makes me feel like a crap mom who has been manipulated, but at the same time I don't want this to be a power struggle. The words "power" and "parenting" just feel asynchronous.

2. It makes me feel like a crap mom who somehow can't see the good in her child. (Not true, at all, but because that is what I am writing about here, it sure feels like a great big one-sided accusation.)

Why am I still feeling like I need to make excuses? Is it an excuse I am even seeking? Why do I feel compelled to make people see how difficult life has been around here? I don't think it will make me feel any better. I don't want sympathy. 

Maybe acknowledgment. I guess I will cop to that. But it's less about anyone else acknowledging how hard the day to day can be, and more about me saying to myself, "You know what? This sucks. And it's okay to admit it. Because in the end you love your daughter immensely. And you know what else? It's fricking okay that you need a break!"

This is why I need a break. It's all the behaviors that we negotiate, sure, but it's also the stress and anxiety and worry. "Am I doing it right? Am I doing enough? Am I totally fucking this/her up? Am I fucking that/Rainer up? Am I giving each child enough attention? Too much to her? Too much to him? Too little to everyone? What about supplements? What about more exercise? What if I'd been more intent on getting out of the house when she was younger and I could maybe manage her better? What about school? Is it school? She needs to be included! Fight, fight, fight for inclusion! What about our rights? Are we being treated fairly? Does she have any friends? WIll she have any friends? Why hasn't she been invited to a single birthday party? Does she even care? Is she going to be kicked out of school? Will she grow out of this? Why doesn't she want to hug me? Why does she hit me? Why is this so hard? Is this this hard for everyone else? Why? Why? Why? Medication? What about side-effects? What kind of parent gives medication to their five year old? You are a bad mother! You are ruining her! Pull yourself together! You need to make more time for you and your husband! Apply for this grant, go to that therapy, if you don't do all these things (and let's not forget deadlines and medical claims and uh-oh, she's aging out of the system)..."

Anyway, you catch my drift?

****

For three years I have been wondering if maybe there was "more" to Georgia's diagnosis. We knew she had DS. And sensory processing disorder. And then came the anxiety disorder label. And then ADHD with tendencies towards ODD and OCD. (siiiiigh....) But for a long time, I have wondered why she was so rigid, so anxious, so inflexible. Why she has such a hard time with change. I wondered if it was all sensory--and much of it is--but I also knew in my gut that there was more.

I would hear other people talking about their kids with Down syndrome and think "That sounds nothing like Georgia."

I started tentatively asking other parents of kids with DS "Does your kid do this or that?" I asked about behaviors. At first I approached it like we were all in the same boat. Of COURSE your kids do these things, right? It's a Down syndrome thing! And while some of the kids did some of the things, it started to become more and more clear that they didn't do all, maybe not even most, the things I was describing.

To be completely honest, when I first started thinking about autism, I felt like it was a deep dark secret. I haven't explored that much yet, but I did. I felt like it was something I didn't want to mention here, or most anywhere else. I think this has to do with my own fear that if I named it, it would grow arms and legs and the face of my daughter.

Most kids with Down syndrome, I found, were friendly and lovable and affectionate. Many were empathetic and sensitive--almost to a fault. Most weren't hitting and kicking and pulling their friends' hair. Most weren't hitting and kicking and pulling their mother's hair. Maybe a small infraction here or there, but not multiple infractions multiple times a day. Sure each kid had challenging behaviors, but it seemed like they would do something and then learn from it. Or, do something and then show remorse about it. I don't know exactly how to describe it, but it seemed like other kids were relating to people in a much different way than my girl.

When it first dawned on me that maybe Georgia had autism I spent the evening sobbing on the basement floor. I mean sobbing. Fetal, gulping, feeling as black and dank as I perhaps may have ever felt before or since. I didn't want the kids to hear me so I stayed down there, but I did try to talk to Alex. My body ached with the knowledge of it, I could barely speak, my words choking in my throat. I thought our life had entirely changed, irrevocably. I thought all of our hopes for Georgia and her future had been squashed. I thought our future looked incredibly bleak.

Hadn't I learned my lesson the first time I had specific(ish) hopes and dreams? Apparently I hadn't. I had all those same questions. Why me? Why me? Why me? Of course me. ANGER! Denial. ANGER! Sadness. More denial. Guilt. Loss. And depression. A LOT of depression. Bargaining even.  

I spent three years (give or take) waffling. Maybe she does have autism, maybe she doesn't. She absolutely does, no way she does. I tried to ask any and everyone I knew "Do you think, maybe, perhaps, she might have autism?"

I asked friends, I asked professionals. I have had more professionals laugh at me and tell me no way, than not. The week before her diagnosis was made formal her sensory OT told us, "You're going to have a hard time getting a diagnosis for her."

It's easy, when you don't really want something to believe people when they are telling you what you want to hear.

I asked friends. Some were more willing than others to tell me what they really thought, but even then, most people only knew Georgia via this blog or Facebook. If they thought maybe she did have autism, it was easy enough for me to say, "Well what the heck do you know, anyway?" I asked my sister who works in Early Intervention, and like me she flip-flopped back and forth.  

But eventually, there was acceptance.

I feel like I was going through this process of acceptance of the diagnosis (starting all those years ago) before we could even get in for an evaluation. Like I said, I knew in my gut (most days) that this diagnosis would be the result, but when you don't have a lot of good models (i.e. kids with DS who do and do not also have ASD), it can make you vasscilate. A lot.

Even the doctor who Dxed her said that Georgia was really hard to "pinpoint." She has really scattered skills across the board. She has a lot of strengths and a lot of difficulties and some of them are in the same arena. End result: sometimes she looks autistic, sometimes she doesn't. And therein lies the rub.

I feel like we got the official stamp on it at the best possible time. I was at a point where I felt like I was basically hoping for the diagnosis, for no other reason than so I could put my own mind at ease. So I could say, "Yep. You're not crazy. You're not imagining this."   

Funny story: when G was in the part of the evaluation where she is observed, she looked so...normal (for a kid with DS). She did all this imaginative play stuff and was happy and talking. She was engaged and charming. She DID do a few "autistic" things, but nothing major.

When we left I told Alex, "I'm afraid she didn't look autistic enough!!" I worried all night long and only slept for 2 hours.

When we went back the next day, I brought in a few other anecdotes I had failed to mention the day before in the parent interview portion of the evaluation, as well as some classroom observations done by the school psychologist which basically make G sound like all she does is hit people and dangle toys all day. (Note: she doesn't do this ALLLLL day, and also, this was written up by the same psychologist who essentially laughed at me when I suggested maybe Georgia was on the spectrum who said, "But she has DOWN syndrome!!!!")

Anyhow, I felt like I had to sort of pick Georgia apart a little to get the diagnosis we felt fitting. 

Turns out, I didn't need to bring any of that extra stuff. Apparently she looked plenty enough autistic in the observation. I guess I didn't fully understand how the tests work or what they were looking for each time they did things. You can communicate and play pretend AND sill have autism. Which I knew...but....

Georgia's official ASD category is PPD-Nos, but in 6 months when they change the DSM it won't matter anyway because that label (as well as classic autism and Asperger's) are going away and it's all just going to be called Autism Spectrum Disorder.

When we left the second meeting, the one where they gave us the diagnosis, Alex and I walked hand in hand out into a sunny day and the first thing he did was to turn excitedly towards me and exclaim like we'd won a prize, "We got it!"

I had to laugh because...you have to go through a pretty interesting journey to get to that point. To woo-hoo an autism diagnosis.

I would say, right now, we're doing pretty good. I still feel relieved and validated. I also feel like things are falling into place in my own mind regarding some of G's difficulties and behaviors. I am having a lot of retroactive a-ha moments. It doesn't make day to day life any easier, per se, I still need to negotiate and calm and change my expectations multiple times a day, but I do think it's making me feel a smidge more patient. I do feel it makes me understand her a little more--especially the more I read about autism. (I started reading about autism at the same time I started wondering if it might be G's diagnosis, but even now, it all seems to resonate in a much more significant way.)

Autism explains a lot of her behaviors, but as the experts like to say, it doesn't excuse them, so we still have a lot of work to do. In most ways, the diagnosis means almost nothing at all. Because I did a lot of the "grief work" before the label was bestowed, now it mostly just feels like a piece of the puzzle.

Still, I suspect there will be ups and downs as we continue on this journey, and I have no idea what the future holds. Then, I didn't before either. In fact, I think I felt more lonely before. Like I didn't belong anywhere. Now, at least, I can fit in with a few places. As with the general population, there is a growing DS-ASD contingent. A growing DS-Plus contingent in general.

And while I've yet to meet someone who's puzzling child exactly aligns with my own, I at least know other people are puzzling. That's a good thing! 

Like the sign in the autism center reads: If you meet one child with autism, you meet one child with autism.

With DS, kids are very different, of course, because all people are different. Generally, however, there is a kind of "list" of things that each of those kids tend to struggle with. With autism, I am learning that the ways in which it affects a person are often vastly different. Hence all the "high-functioning/low-functioning" language that people in the ASD community use and people in the DS community tend to frown upon.

Mostly, I feel like I just have to fall back on my "it is what it is" mode of thinking and laugh as much and as often as possible. I know these last several posts probably don't make it sound like it, but I think we're relatively good at this, Alex and I. You develop a sort of gallows humor. Or, sometimes it doesn't even require that. Georgia is, without a doubt a funny, charming, bright little imp. I think it's the fact that I like her SO much that can make it hurt so much that I can't always understand her.

I mean, I don't want to lie, I clearly have a very dark and over-analytical side, and I clearly stress and fret and worry--a lot. But! The first step is recognizing you have a problem, right??

I know that I need to lighten up more. 

I am writing about this here and now in large part because I feel like I finally have the time and space--in all senses of the words. It's my aim to get some of this stuff out here so that I can let it go in real life.

This is a massive brain-dump. I have been recognizing for a while that I am so wrapped up in the lives of my kids--particularly, this year, Georgia's--that I have lost a bit of my self. I have certainly grown and evolved as well, but now I have a little time and space. So I just have to put all this down here. Unburden myself a little. And we'll see where we go from here.

(Methinks my next post should tackle something entirely different.)

And now, I've got a glass of wine with my name on it! (FYI, I wrote this last night. I haven't start drinking before 8am. Yet.)

Comments

[aubrey]

Wow, so much to handle! Kudos to you for working so hard to take such good care of your girl.

[Tricia]

Thank you, Aubrey!

[C]

6 was hard for us too. One thing that helps - - Bose noise canceling headphones.

[lp.]

You are a thoughtful mom! Sending you my best wishes.

[krlr]

Hugs! That's a lot to process but it must be such a relief to have waded thru - maybe not to the 'end' but, as you said, to a better understanding.

[Jill B]

You are doing a great job. How lucky Georgia is to have you for her mom. This post shows how much you love her, how well you know her and all you have done for her. I think you have given the ultimate gift...acceptance of who she is..even is it is hard.

[starrlife]

Have I told you that I have a soft spot for people with Autism? You may have guessed already but how much I love, even the difficult ones, stories about G. In my experience (much like the oh so cute comments for DS kids I fear)the folks I have met or worked with have such an inviolable authenticity to them - they are who they are and the world be damned. There is something about that that I admire and enjoy. Not to say it hasn't tested my patience and caused despair once in awhile. My advice- don't worry, outside of funding, about the label specific- it is a spectrum and there are all shades and degrees and presentations. It's social- just on their terms. So happy that she is reaching out and being more expressive towards you, xo.