I finally sacked up and called. The lady was just about to call me (oops) and was super nice. Anyway – she’s in! I’m so relieved. And once again struck by how lucky we are to be in the right place at the right time. Sometimes these folks have a year or longer waiting list but because we called right now when they are just starting to fill up next year’s preschool class, Louisa gets to start this coming school year – at the end of August. So we only have to fill the gap for about six more months. Phew.
When I was in high school I had this boyfriend. He would call me every day at roughly the same time. It’s hard for me to remember, because that was 20 years ago (HOLY SHIT) but I think he had a job and would call me when he got home. Again, because it was 20 years ago, those were pre-cellphone days. Meaning I couldn’t just take my phone with me everywhere and wait for his call, I had to sit at home right next to the phone and waaaaaait for him to caaaaaaall. Yes. I was that girl. The slightly chubby one with self-esteem issues whose entire day, nay, life depended on whether or not he called. How I would like to go back in time and slap that girl but anyway, one day he didn’t call. I waited and waited and waaaaaited and WAITED and he didn’t call. I tortured myself with thoughts of why. Sat by the phone until 10 o’clock at night. My dad assured me that something had happened and that he would eventually call. Or that DUH when I saw him at school the next day he could explain himself. But I knew the truth. And sure enough, that weekend he broke up with me, thus busting my heart into one million teeny, tiny pieces.
But that is not the point of my tale of woe. Let’s focus on the waiting by the phone. And how much it sucks. Especially when you are The World’s Most Impatient Person. Yes. I am. I’ve checked. I hate waiting. So very much. It drives me insane. Especially now that we DO have cellphones and thus I can carry it around wherever I go. Bathroom. Laundry room. Back pocket whilst bouncing/patting my kid to sleep. Back to the bathroom with it at top volume so I can hurry and take a shower.
We still haven’t heard back from the school about Louisa. Is she in or do we make other plans? I have no idea. The folks told me I would hear back Thursday afternoon or Friday morning. At the latest. It’s now Monday. Do I… callll? Give ’em a few more days (by which I mean waaaaaait by the phone some more…)? The preschool director has thus far not been the most organized person in the universe. I had to leave two messages before she called me back to schedule the evaluation. Then she forgot to send the mountain of paperwork that I was supposed to have completed and sent back before the evaluation so I had to call about that. And then she wasn’t even there for the evaluation because her kid was sick and she had to go home early. So logically I can assume that maybe she also missed Thursday and/or Friday and they have yet to have their little meeting and decide my daughter’s fate let alone call me back about it. But logic doesn’t soothe The World’s Most Impatient Person.
I hate waiting.
Yesterday I took Louisa to be evaluated at a special preschool for spectrum kids. I meant to write about it beforehand but have been living in a crazy house for a few days because of a sick Simon (I am only able to write this now by typing as q u i e t l y as possible because the planets have somehow aligned and both of my children are sleeping at the same time. Shhhh…). I have no idea where he caught this mysterious cold because we don’t really take the kids many places because it’s winter and nobody else in the house is sick. Yes, I know, knock wood because as soon as I say that the rest of us will be feverish and coughing. He either picked it up from the grocery store or from the early intervention lady. But she wasn’t sick when she was here and she didn’t sound sick when I canceled our Monday appointment because I had to take sick Simon to the doctor so that she could tell me it is just a cold (I figured as much but what if I was the mom who didn’t take her kid in only to find out that it was whooping cough or croup?). Just a cold. No big. Except that for sick babies you can’t really do much. By which I mean you can’t dose them with NyQuil and let them sleep for three days. Which is a pity, really, because SICK BABIES DO NOT SLEEP. And thus, neither do their mothers. He finally seems to be on the mend (aside from a horrible lingering cough, poor little dude) and actually slept last night which is good because I think one more sleepless night may have brought on some sort of psychosis on my part.
But anyway. The evaluation. The school. Such a wonderful place. We were there for about two and a half hours, most of which Louisa was in a classroom. Without me. I had thought that I would be scared shitless by that prospect but oddly I wasn’t. And neither was she. No stranger danger from that one. After I talked to the social worker for an hour I got to sit behind a two-way mirror and observe the classroom. Louisa fit right in. I think it was good for me to see other spectrum kids, because I haven’t seen many, and realize that she is not alone. We are not alone. And if anybody can help her, these people can. The teacher to kid ratio is 1:2 in every classroom. Everybody is trained in ABA therapy which is the gold standard for autism therapy. They work with the kids on speech therapy, sensory issues, developing social awareness, food/feeding problems (which Louisa doesn’t have), motor skills (again, not one of her problems), safety awareness (glory hallelujah! Louisa has absolutely NO safety awareness. So glad this issue will be addressed), toileting (meaning helping us parents out with potty training because spectrum kids are notoriously difficult to train), behavioral problems (i.e. the epic effing tantrums) and probably other things that I am forgetting. In other words, rather than us piecemealing a plan together by finding an occupational therapist and a speech therapist, somehow figuring out how to get her potty trained, hoping that we can figure how to teach her that running from us in a crowd or a parking lot is dangerous, and sending her to the Early Intervention preschool for 4 hours per week, hoping that any of it will make a difference, we send her to this place where she will get ALL OF THOSE THINGS, for 27 hours a week. Needless to say i am on pins and needles waiting to hear back from them in the next couple of days.
I am very hopeful that they will decide she is a good fit. She meets all 12 of the DSM diagnostic criteria for autism (not a surprise to me). She fit in well in the classroom and seemed to respond to the staff and their teaching efforts. Plus, they were all in love with her. Every single person we came in contact with gushed about how cute she is, how pretty her eyes are, how magical her golden ringlets are. I know looks aren’t everything, but they can’t hurt, right?
Yesterday a new Trader Joe’s opened just down the street from me (walking distance, people, walking distance). So of course I had to stop by. As I was wandering up the aisles I was suddenly transported back to Portland. The good part of Portland. The part I loved. And it struck me, once again, as it has so frequently in the last six months, that this is the place (cough, sorry, couldn’t resist) where we are supposed to be. We meaning me and my family. And this place being Utah, not Trader Joe’s. If any of anything that is happening right now were to be happening in Las Vegas… I would be lost.
Last Thursday was The Appointment. The one with the psychologist. The one where we’d get a diagnosis. If you’re a regular reader you’ll remember that I was slightly uncomfortable with that whole concept but as with most things in life it turns out that I shouldn’t have been. He was wonderful. He has been working with spectrum kids, as he referred to them (which actually I quite like and may adopt for my own personal use), for 20 years. It’s all he does. It took him all of about 15 minutes of listening to my concerns and asking me questions, all the while observing Louisa, to indeed confirm our suspicions. She’s definitely on the spectrum. Watching him watching her I had noted an odd questioning look on his face and was thinking to myself “seriously dude? you’re not 100% sure?” but he was. He was merely trying to figure out exactly where she belongs. If you’re at all familiar with ASD you’ll know that in 2013 the DSM-V came out and changed the landscape of autism entirely. What used to be four separate developmental disorders are now lumped under the umbrella of autism spectrum disorder. As with lots of things in this world there are both pros and cons to that. I’m not here to debate them because personally I don’t care. For diagnosing purposes it makes things a little bit easier, according to the psychologist. It used to be that you would have to figure out which diagnosis to give; now if someone meets the criteria for ASD, they meet the criteria and thus, are diagnosed. It is, however, helpful for parents (and healthcare professionals) to know where someone fits because then you know better what to expect.
In Louisa’s case he could figure out two things: 1 – she’s mild (huzzah!) and 2 – she doesn’t have classic autism, a.k.a autistic disorder (which is a good thing). What he couldn’t figure out was whether she is high-functioning autism, Asperger’s or PDD-NOS. I had thought that she was out of the running for Asperger’s because they typically don’t have a speech delay but he said that’s not actually the case and that high-functioning autism and Asperger’s have so much overlap that some people have just started considering them the same thing. He wants to see her again in a year because at 3&1/2 it is often easier to tell where exactly someone fits, but the takeaway point is that she is mild. With lots of various therapies she has a pretty good prognosis.
And just like that most of my anxiety (read as: freaking the fuck out) ceased. Obviously we still have a long and probably rough road ahead of us, and the future is still anybody’s guess, but he seemed so optimistic that I guess it rubbed off on me. Or maybe just finally having an answer after six weeks of wondering, worrying, sleeplessness and heartache took me out of holy-shit mode and put me into WE-CAN-TOTALLY-DO-THIS-GUYS mode.
We are so lucky. I know. My daughter was just diagnosed with autism and I’m saying we’re lucky. But if I’m looking on the sunny side of things which, as you know, I am so good at (PAH HA HA), things could be so much worse. We could still be in Nevada (no offense, Nevada, you just didn’t do it for me). This could have happened while I was in the hospital already worrying myself sick about Simon. She could be so much more severe. Plus, we caught it fairly early. We have so much time to do so many things.
As it stands, there is a wonderful school here for spectrum kids. It has a waiting list but she’s only 2&1/2 – we’ll probably eventually get her in. And if not there are many other available resources. For us and for her. There will obviously still be bad days and he told me lots of things that both scared and saddened me but he also told me things that made me feel very optimistic about our hazy future.
“How are you?”, people keep asking (and by ‘people’ I mean ‘my family’ because I don’t really talk to anyone else). “Uh… fine”, I answer them. Because what else can I say? Let’s see… I’m sad, angry, confused and scared. Not to mention I’m feeling more than a little bit… I don’t know what the word for it is. What’s the word for feeling like everything that is happening to you is total bullshit? That none of it is fair and why is it happening to you and your family instead of somebody else? Whatever that word is, I’m feeling it. Also completely and utterly exhausted because of all of the things. The autism, the 10-month-old kid, the part-time evening job, the lack of sleep, the back pain, being fat, etc.
Monday was yet another appointment for yet another speech evaluation for Louisa. Her speech was already evaluated by Early Intervention. But half of the evaluation for autism by the people who are evaluating her for that (honestly you guys, I have looked it up at least 30 times and for some reason I just. cannot. remember. it.) was another speech evaluation. And… her speech is… none…basically. I don’t mean she doesn’t have words because she still has a few and sometimes she will still use them but the words she does have are essentially useless because she doesn’t have any functional language. Like, she doesn’t know any verbs – especially any helpful ones like eat or drink or NO I DO NOT WANT THAT, I WANT THIS, WHICH IS WHY I AM THROWING THE WORST TANTRUM IN THE HISTORY OF TANTRUMS. According to the evaluator her expressive and receptive language, her communication/interactive skills and her social skills are severely deficient. Which, in case you didn’t know, are all of the things that one would expect to be nonexistent in an autistic person. But she can’t diagnose! She’s just evaluating her speech! We’ll have to wait until Thursday to see the psychologist for a diagnosis! She handed me about 20 different packets about autism and/or how to help kids learn to talk and sent me on my way. And PS: Can I just say… taking my 2&1/2-year-old child to a psychologist…I don’t even know. I’m apprehensive about it? I guess?
Let’s just move on. Apparently that’s one of the things I can’t even deal with right now. There are a lot of them. I’m not sleeping. Mostly because of Simon but also because of not being able to. So I’m completely exhausted. And keep forgetting things. And dropping things. And bumping into things. Also I have a permanent eye twitch. And when Louisa has one of those gigantic endless tantrums (which in the autism world are known as meltdowns) I basically have to take deep cleansing breaths and not freak the fuck out because I so want to freak the fuck out. I’m not kidding about how bad they are. It’s almost comforting to know that there is a reason other than she’s just a jerk, you know? Like, my kid isn’t just a gigantic asshole, she’s either A – experiencing some sort of sensory something or other (I don’t even know any of this stuff yet – more reasons to panic) or B – so frustrated by her lack of communication skills that the only thing she can think of to do is shriek/cry/kick/punch/throw herself on the goddamn floor and writhe like she’s possessed. That was how I spent my Saturday. Her throwing basically an hour-long fit, on and off. Part of it was in the parking lot at Target (because brilliantly we thought that maybe getting her out of the house and walking to Target (it’s literally a two-minute walk through the back fence of our parking lot) would help. We were so very wrong, obviously). In the midst of all of it my husband was getting a cart out of the corral and somehow managed to tear his calf muscle. I don’t know how he did it, he doesn’t know how he did it, but he did. And suddenly he can’t walk at all, I’m trying to simultaneously push Simon in his stroller and hold/comfort a SCREAMING-SO-EMBARRASSINGLY-LOUD Louisa and… it pushed me over the edge. I was that lady hissing things at her screaming child. Things like ‘stop it right now! I am so sick of this bullshit!’. It wasn’t good. None of it is good. Have you ever read/heard/seen that quote about how God/The Universe doesn’t give you more than you can handle? Or that this is the life you were meant to have because you totes got this, dawg? Or some variation on that theme? I saw that somewhere the other day and wanted to punch someone in the throat. You guys. I can’t even handle this. The only reason people can handle things that they have to handle is BECAUSE THEY HAVE TO. Like, I don’t really have a choice. I can’t just trade in my life for a different one that’s easier. So yeah. Just so you know – don’t say that to me right now. Or probably anyone else who is having some sort of difficulties.
So. How am I? Um, not good? Terrible? Hovering right on the edge of totally losing my shit?
I need to somehow find the time/gumption to move Simon into his crib and also convince him to start taking bottles. I only have two more months of nursing, thank God. I am so sick of it I could scream. I love the kid. OH SO MUCH. He is so smiley and cute and wonderful. But I would like my body and my bed back. It’s my fault for co-sleeping and for being a rabid breastfeeder, and I’m still glad I made those decisions, but I’m done now. Also, I maybe need some drugs. All I have to do is find a doctor, make an appointment at some convenient time (read as: never because what do I do, take my screaming toddler and highly mobile soon-to-be toddler with me?), go to that appointment, get a prescription, fill the prescription… you get the point. I sat down to call my insurance company for help finding a doctor today and Louisa started screaming and I couldn’t even deal with it. I hung up. Why does everything have to be overwhelming? This is America, can’t we just get antidepressants in a vending machine or something?
In the next three weeks Louisa has a series of evaluations to determine exactly what is going on with her. As I’ve mentioned before, we’re fairly convinced that she falls somewhere on The Spectrum but we don’t know exactly what she has or how bad it is. Next week she has the second part of an evaluation by Early Intervention where they will check her vision and her hearing, after which we can get started with speech therapy and probably some other stuff. A couple of weeks after that she has two appointments, one which is another speech/hearing evaluation (since it’s a different organization we apparently have to do it again) and one which involves a psychological evaluation and some other stuff, and which will give us an actual diagnosis.
When we first started thinking “hmm… something’s going on here… and it might be Ye Olde Autism” I did what I always do which is go into Extreme Research Mode whereupon I checked out every book the library has (I’ve read books about autism, books about Asperger’s, books about the guy who first coined the term “autism”, books about Temple Grandin, books BY Temple Grandin, books about autism and diet, books about autism and gut bugs, etc etc ET FRICKIN’ CETERA), scoured all of the websites out there and watched all of the documentaries/movies (Sounding the Alarm = helpful, Rain Man = not so helpful) to try to figure out what exactly is going on and what exactly we can do about it. In the midst of all of this, I came across a group of people who are loud and proud about their or their kids’ autism (and really, good for them) and neurodiversity and how we should all accept autism as just a normal variant. I am not sure, right now, how I feel about all of this. While I understand what these people are trying to say and where they are coming from, I want to do everything I can for my sweet daughter and therapy (be it speech therapy, behavioral therapy, occupational therapy or any combination thereof) could mean the difference between her talking and her being completely nonverbal for the rest of her life, the difference between her going to a mainstream school and her being shoved into special education, the difference between her learning to be an independently functioning adult who can take care of herself and her either living with me until I die and then me being panicked about what will happen to her when I’m gone or, worse, her ending up in some gross institution.
So while I get the movement that is all about not giving your kids a label or letting them be defined by a diagnosis, I can’t get any help without that diagnosis. Until we know if Louisa has autism or PDD or anything else spectrumy, and whether she is mild or severe, we can’t really get the services that we need. And that, my friends, is why she has all of these appointments and that is why I’m looking for a label – not so we can throw it around for special treatment or use it as a crutch, but so my baby can learn how to communicate and be the best she can be.