As with any kid, I updated people compulsively about Quinn long before we suspected there was anything wrong.
In retrospect, when I read the emails I wrote before we started the testing and screening process, it is interesting to see the record of signs that existed (her giant baby head, late to walk, not answering to her name, stacking, OCD behaviors) and how I talked about the situation differently to family, friends and therapists.
If you have emails, or a blog, or videos, or any record of your child’s development, pre- and post-concerns, look back through them and give yourself and your kid an honest assessment. It will help you and your doctors and therapists.
I only wish I had CC’d myself more often. And there isn’t much talk about her decline in these emails, because it was frightening and we didn’t want to share it, or even face it ourselves.
April 17, 2006 – 13 months
Hey everybody -
Just got back from going to the doctor with Quinn and thought I’d send out the baby update: She’s 31.5 inches tall – which her doctor referred to as “off the charts” – and weighs 24 pounds, which is about 85th percentile.
Not walking? OK – her standing up is good enough. Vocabulary? Exceptional. Crying during shots? Some, but mainly it was the trauma of laying on the crunchy paper that set her off.
Her other words include truck, kitty, dog, goor (squirrel), fish, mama, papa (grandpa or any other company that shows up at the house), meh-meh (gramma – just added on Easter), baby, hat, “pah-pah” (panda).
Her new favorite game: She puts items in a bucket or cup while you count them – usually we count to four. Things will go along nicely, until suddenly, just as you are saying “threeeee” she will jerk the item back to her tummy and laugh, delighted that she has faked you out. Next time, she’ll fake you out on “one” or “four” and every time she thinks it is hilarious that you haven’t caught on. She’s going to be a funny girl.
Speaking of which, last night Elly and I were nagging Michael to go pick up some dinner, and Elly said, “Michael, go get us some food! We can’t just eat the little bits of dead skin off our thumbs forever!” Ugh! She’s so gross and hilarious.
Alright – I should sweep or something. People in this house seem to like clean socks and whatnot.
May 1, 2006 – 13.5 months
So, she has started singing “E-I-E-I-E-I-E-I-E-I-E-I,” so I had written out “E-I-E-I-O” on a card to point at it while we sang. Later that afternoon in the car, I hear her in the back seat: “E-I-E-I-E-I-E-I-E-I-E-I-E-I-BALL!”
May 13, 2006 – 14 months
Quinn is also crabby and frustrated because she is having her little mental growth spurt but being sick for 5 days put her off walking completely and she’s all wobbly all over again.
When I pulled her out of bed yesterday and said, “Do you need some breakfast?” She answered “Na-na! Ttt! Kirkle! Ba-ba!” which is to say, “Bananas! Toast! Cheerios! Bottle! Feed me anything, woman! I’m starving!” I like that she has started saying things that are in her head, not just the stuff that’s right in front of her.
Over the course of her illness (and my being so tired I surrender to the DVD at the slightest provocation) became addicted to “Blue’s Clues: Shape Searchers” and will stand at the TV crying, “Kirkle! Kirkle!” until someone turns it on for her. I think it’s a pretty good vocabulary for 14 months. But that isn’t going to stop me from going out and buying her some shoes tomorrow so I can march her around the yard. Git to walkin’!
June 6, 2006 – 14.5 months
We drove by the Crawford’s and they were outside, so we stopped by there for a few minutes. Amelia is adorable – her hair is gorgeous, dark red ringlets almost to her shoulders. (I gave Q a bath this morning and her hair dried into a giant, golden puffball. Like a Golden Girl, really.) Amelia and Quinn had as much fun as two babies that age can have with each other (handing each other stuff, alternately trying to hug each other while the other one whines and pushes.) Amelia is a better walker, and Quinn is a little taller. But Amelia looks like a toddler and Quinn looks like a giant baby. It is going to be a hard day for me when she steps into those toddler looks.
…Meanwhile, Elly and I respond to any negative situation with, “I knew it was a bad idea to buy that seeing-eye lemming.”
October 10/21/06 – 19 months
Hey!
Just wanted to let everyone know we made it back from vacation in one piece.
The girls were as good as they could be. Elly was perfect, of course, and either kept herself busy or kept Quinn busy for the entire time we were in the car. She monopolized the motel room cable TV with a whole lot of Animal Planet, which seemed to be having some sort of polar bear marathon. After watching several hours of polar bears and their relentless stalking, whale-slashing, cub-eating ways, I suggested a special titled: “Polar Bears: Jerks of the North.” Elly amended it to “Polar Bears: Mafia of the Arctic.”
One morning at free continental breakfast (the loveliest three words in the English language), she watched me dip a doughnut in my coffee and proclaimed, “Why, I think it’s time we got you a license!” which is precisely the line of dialogue uttered when the titular Lady of “Lady and the Tramp” dips her doughnut in a saucer of coffee. Nothing gets by that kid. Nuthin!
Quinn, however, made the trip somewhat challenging by deciding that neither car nor hotel room were appropriate places to sleep. The cart at Ikea at 1 p.m., a fine place to sleep. A queen-size bed at 2 a.m., not so much. Those who know Quinn and her constant demands for night-night and her need to sleep about 17 hours a day will know this is unusual. She was very happy to get home and flop down in her beloved crib. And we were all happy to see her do it. I am wiped out.
We visited the Bell Museum where Quinn had a long conversation with a taxidermied wolf whose tail had fallen off. Then we hit the Mall of America, where Elly and I screamed ourselves hoarse on the Timberland Tumbler and Paul Bunyan’s log ride.
So we’re back in Pensacola. If anyone needs us, we’re here catching up on homework and laundry.
love, jahna and company
December 11, 2006 – 20 months
Things are per usual for December at Hatton Manor. Both girls are sick, Quinn has been for a few days and Elly woke up all crappified this morning, as is her birthday week tradition. Quinn has been all “Hug me! And stop touching me!”
She has been talking a little more, but she’ll only say something if she can figure out a noun/verb/object/modifier construction.
The other day I turned on the hose to water the plants and Quinn said, “It’s water.” And I of course looked at her as though it was one of the pets who had suddenly spoken, and said, “Whaaaa?” And she looked at me and said, “It’s water. It’s wet.” Then stuck her thumb in her mouth and ran away as if we were never to speak of it again. She has also said, “I see water” and “I’m hungry” while she pats her tummy, and “Look, it’s a clock.” But she will not just name something or demand something. She also sings and sings and sings. She loves Mary Poppins and was singing the theme to Blues Clues the other day, too, complete with little hand motions.
Stacking things is her other obsession, and I mean obsession. One day last week she sat for 90 minutes (I actually timed it) and stacked and restacked her 10 plastic Oreos. (By the way, the only number you really need to count is “Three.”) She has plenty of blocks, but also stacks her other toys, Cheerios, playing cards, postcards, and last night at the Waffle House she made a crazy tall pile of hashbrowns, to which we couldn’t help but say, “This means something!”
Dec. 19, 2006 – 20 months
Betrayed by my easy baby (who, granted, napped from 3 p.m.to 7 p.m., then went to bed at 10 p.m.) I am up at 5:30.
I don’t think you have to know a baby very long to tell what they are like. I mean, they are going to change as they get older, sure, but it’s not like they know how to mask their more challenging personality traits until you’ve let them move in and have co-mingled your album collections.
For example:
Elly is born and spends 30 minutes tearlessly yelling into my face, never breaking eye contact. Not sad, not upset, just straight-up angry. I look at her and think, “Oh, yes. So we meet again.”
Quinn is born and says, “Waaaaaah…eh, whatever.” Then falls asleep while they weigh her and take her blood. I look at her and think, “My, you are so mysterious. We’ll get to spend the next 50 years getting to know each other. And then you can explain your dad to me.”
And that’s pretty much the way it has gone so far. And I make the most concerted and conscious effort not to project, because in the argument of nature versus nurture, I think there are only so many natures and many, many ways to screw them up. But they are just different. There are benefits to both. Like, I never had to guess what Elly was thinking, but the other day I guy with a little Maltese stopped by the house on his walk and Quinn totally ignored him and glanced only briefly at the adorable puffy dog. Instead, she ran around the yard in circles. Then when the man walked off and she saw that little dog going down the street she had a total, open mouthed, snot-fountain meltdown. I was all, “Oh, do you have feelings? You should have said something. Or made any indication.” I’m anxious for her to start talking so I can have the faintest clue.
Uch, I’m looking over at Quinn right now and the words that come to mind are “setting lotion” and “beauty parlor.” I can predict the day’s weather in the dark as I get her out of bed. On dry days she looks like a dandelion gone to seed, every hair taking its gravity from some distant star. But it’s going to be humid today because she looks like she’s about to tie a clear plastic bonnet over her head, grab a plate of finger sandwiches and set out to bridge at Margaret’s.
She is attempting to make a stack of Corn Pops. She will try and try to do something dozens of times, then put it away for later. She will do something, destroy it, then redo it for hours. Elly will try something once, and if it doesn’t work out she tosses it aside and never tries again – she’s a little like her mama.
Alright, I have to let Quinn out of the high chair and watch her play so she can pretend I don’t exist. There’s something to be said for easy babies, but there’s also something to be said for the needy child who seems to actually want a parent…
Love you and miss you! Talk to you soon, jahna
January 8, 2007 – 22 months
Hey everybody – For those who may be skeptical of my constant discussion of Quinn’s stacking obsession/prowess, I offer the following photos. She has turned her room into a little fairyland of columns.
From left: two soft block stacks, a stack of plastic Oreos, a stack of alphabet blocks, a tower of rectangular wooden blocks, and, center, the cylindrical block stack in progress. These are all her handiwork. Also, Pooh Bear and friends are neatly lined up outside the dollhouse. Multiple attempts convinced her that they are nearly impossible to stack.
February 27, 2007 – 23 months
Just a happy something to start your morning:
Scene: Quinn and I buying some fish food after 30 minutes of running around PetLand.
Clerk to Quinn: Did you see all the doggies today?
Quinn: My name ma Nemo! (My name is Nemo.)
Clerk: What?
Me: She likes the fish better than the dogs.
Quinn: Memo! Nemo! Ma mame na Nemo! (spots a bunny…) Babbis! (Rabbit!)
She’s very into the Nemo again, and carries her two stuffed clown fish around (formally known as Fish and Two Fish, in no particular order – now known collectively as Nemo Memo Memo Nemo Memo) and plays Nemo all day, especially the part where Nemo gets his head stuck in some coral (or the sofa cushions) and his daddy has to pull him out. Very exciting stuff. She also proclaims throughout the day that her name is Nemo, so maybe we’ll give that a shot since “Quinn” doesn’t seem to be working for her.
March 1, 2007 – 23.5 months old
Nothing like a little insomnia after a grueling day…
Well, Quinn had her appointments with the speech and hearing specialists today, and the results were a little sad, although not really surprising.
Her hearing was described as “within the range of normal,” which is probably about as close as you can get when a child spends the entire hearing test either screaming or crunching loudly on a sucker.
Her language skills, on the other hand, were placed somewhere in the range of an 11 month old, with her receptive language skills somewhere around 7 months and expressive around 15 months. To be fair, the poor kid unexpectedly went without a nap and almost fell asleep on the floor of the screening room – she was not at the top of her game. Overall, I think if you hang out with her, you would put her somewhere around 18 months. However, the speech pathologist did suggest, rather pointedly, that we have her screened for autism, and we were all, “Um, we’re trying. That’s why we’re here.” So we’re getting her set up for twice-weekly speech therapy.
After we talked about it, perhaps with the unreasonable optimism of hopeful parents, we kind of thought that she’s going to have to want to communicate something before she bothers to learn to speak, and you have to want to interact with people to want to communicate with them. So, I think – and here’s the optimistic part – that the leaps she has made in actually inviting us into her playtime and using imaginary play are going to now accelerate her desire and motivation to speak.
Coupled with speech therapy, where people are not going to give her what she wants because they just “know” what it is (which we do a lot around here, kind of taking it for granted that if she stands in front of the fridge and whines she wants a drink) i think she’ll be on the right track.
So it was hard. You can be all Pollyanna about things until they start with the battery of questions and you have to answer “no, no, no, no, no…”
As I have probably mentioned, her autism screening isn’t until July, but we’re on a waiting list to slide into an earlier appointment. In the meantime, we’re just supposed to stay in her face and use as much signing as we can and get a little tougher with making her ask for things verbally – which is tough because she is the world’s most delicious slab of pumpkin pie and because she can reach all the food in the house and just stuffs her face with Goldfish whenever she darn well feels like it…
May 22, 07 – 25.5 mos.
Hi everyone,
I was just writing to let you know how Quinn’s autism assessment went this morning.
For the most part, the news was good. The woman who came to the house spends all day every day doing these assessments. She said that if we were just people she knew and she had just stopped by the house for a visit, nothing about Quinn or her behavior would raise any red flags. And she said Quinn was beautiful, gorgeous, precious, sweet and lively about 5 times each.
Then there was a lengthy questionnaire in two parts. She scored slightly under the threshold on one part and moderately over on the other. However, the woman said that based on her observations, she wouldn’t be concerned about it, as she could see from Quinn’s behavior that some of the points attributed on the second part are not things she can’t or won’t ever do, but just things isn’t quite up to doing yet – those things included waving hello and good-bye and nodding yes or no. Her basic thoughts were that we should really work on those skills over the next few days and she’ll get back with us at the end of the week to see how it’s going.
She is already slated to have a more extensive assessment in July, but it may or may not be necessary depending on how she does over the next few months.
Here’s the thing – even if she does have an autism diagnosis now, she is borderline enough that it could easily change if she is tested again in 6 months or a year. And, she is already in line to receive all the therapies available for autistic children based on her other assessments. I kind of thought maybe there was some kind of specific autism therapy or program, but no. We would just be sending her to speech and developmental therapy, and that would be it. So we are already doing everything that needs to be done at this point.
Yesterday, Michael, Elly and I made up a list of words that Quinn knows. Last summer she was up to between 30 and 40, but when she went to her speech assessment February 28, we struggled to come up with ten. That was not good. In the last three months, she has increased that to over 100 words, including: french fries, motorcycle, kangaroo, popcorn, hot, “what do you want to do?” and “dummy dummy dummy!” That’s about a word a day. It is as if we bought her a calendar.
All the right things are being done and Baby-Q is getting it all on track. She’s the hardest working baby in show business! Now if she would just wave bye-bye…
June 2, 2007 – 28 months
We are still waiting on the final, actual report from Quinn’s autism assessment, although it’s almost irrelevant at this point anyway since she is improving daily and has already started her speech stuff and starts the other this week.
However, I can tell you that a mere three viewings of “Lilo and Stitch” have turned her into a complete raving lunatic. That one is going back on the shelf. Man, for the kicking and the tantrums and the screaming into throw pillows and the rambling on and on about needing a peanut butter sandwich for the fish who controls the weather… She is a little too deeply affected by the Stitch saga. Imaginative play is good, but I’m not really embracing Lilo and/or Stitch as a role model at this point. The whole thing where she destroys the house then pitifully says “I’m sorry” is cute exactly three times. Then you have to nip it! Nip it in the bud! Express yourself, but not that much. Damn!
I’m trying really hard to be proactive and keep on my toes about what we can do and planning ahead for activities and stuff, but I am just mentally gone. Never has there been a time in my life, ever, for a second, when I was thinking about nothing. Now I can sit for 30 minutes at a stretch with an absolutely blank mind, like my head is made of wood. Compounded stresses, maybe?
The last few months with Quinn have left me feeling as though we had received a hurricane warning, category 5, headed straight for us, and we prepped and worried for a week and then it disappeared in the gulf. I mean, you are glad it is gone, but you are left with all this pent-up preparation and coping and nowhere to put it. It’s oddly exhausting.
I also realized, sitting with extended family during a lengthy dinner, that I have forgotten how to talk about just about anything else. Mainly I realized this because we aren’t saying anything to anyone who isn’t in the thick of it daily until or unless it is absolutely necessary, which it might never be. So I had to think about other stuff to say. And there was nothing there. What a bore I have become! I need something different to complain about.
And now I’ve rambled on another two paragraphs about it, so I’ll let it go.
June 16, 2007 – 27 months
Quinn went to the eye dr. last week and of course they discovered there is nothing wrong with her eyes. And of course we had to wait an hour after our initial check in, so when the doctor tried to look in her eyes, he might as well have been trying to check the eyes of a cat while I bathed it. She SCREAMED and writhed uncontrollably while I frantically wrassled her – until the light went off, then she paused to calmly and thoughtfully say, “Oh, it’s dark.” Then she went right back to screaming. So, she wasn’t truly out of control, she just didn’t like It. And after an HOUR in the waiting room, I was tempted to do a little fit-pitching myself, so I can’t blame her. If you are a PEDIATRIC EYE SPECIALIST it might occur to you that keeping patients waiting an hour is a really crappy idea.
And I got a momentary thrill last week when Quinn looked at me and signed and said “I….love….you!” (pointing at herself for both I and you) until she pointed at me and added, “Joe!” and I realized she doesn’t love me, she loves Blue’s Clues Love Day episode when Joe gets a Love Day card from Cinderella. So, I’m changing my name to Joe.
She has, however, started giving hugs. And it is the sweetest thing, because you know it isn’t just reflex, she really, really means it. Especially if your name happens to be Joe. We’ve been practicing by hugging stuffed animals and at first she would only hug our legs, but she is starting to hug the upper parts of our bodies – precariously near our faces – as well.
She is also drawing and saying what the drawings are (mainly boats, cars and airplanes – one drawing had a boat and an airplane plus a tree and a ball) and the next day she will look at it on the fridge and say, “look! boat tree airplane ball!” so she actually knows what it is even if we can’t really tell. And she has started making things out of play-doh and saying what they are.
These are all very good, non-autism things. Once we get some sort of actual conclusion back from her screener person, I will stop fretting and sharing all these details.
June 17, 2007 – 27 months
Hi (autism professional)!
Quinn has started occasionally spontaneously waving good-bye to people. It is hesitant, and it seems to pain her, but she does do it. (Of course, she grabs her own elbow and uses one hand to wave the other, since that’s how we’ve been coaching her.) I would say every other day or so over the last couple weeks.
We have also been purposefully working on hugging for the last week: We will both hug stuffed animals, which she loves to do, and talk about how we love to give good, big hugs. She has begun to run up and spontaneously hug our legs, although she’s not excited to give you a hug if you sit down with your arms out. She will, however, in that situation, run over to you smiling and turn around to sit on your lap so you can give her a big hug. Baby steps!
She has also started engaging in more spontaneous imaginary play like feeding her stuffed animals, dressing them up in hats, setting them down and saying “night-night, cat” or “night-night, Pooh.” She has also been playing with a set of dollhouse toys I brought out for her, sitting the people in chairs, brushing their hair and making them walk around.
She has started making things out of Play-doh (that, granted, look nothing like the cat or duck or whatever she says they are), but she will squish it around and say “duck” then make it hop around the table saying “Quack quack.”
She will sit on her potty and when she stand up, she looks into it and makes a flushing noise. She has started doing things to make us laugh. A favorite is dramatically yelling, “How dare you!” She has also been pointing at things (dogs, chips, etc.). And she will say “Look!” although she is not yet pointing and saying “Look” at the same time.
She has just started her speech therapy, and does absolutely nothing while she is there, but then talks about it all day long afterwards: “A bus. A bus a boy. A bus a girl a boy. Lamp on. A puzzle cow….” But, she has only had three sessions and the first one was mostly crying, so we’re getting there. Just wanted to touch base with you! I hope this find you well and happy. Let us know when you have something for us.
June 19, 2007 – 27 months
I figured you had been busy, so I hope I wasn’t a nuisance.
Quinn’s therapists haven’t really had a chance to notice anything yet (I don’t think) because it has only been a couple weeks (with last week off for M___ and this week off for E___) and she hasn’t really warmed up to the idea of showing them too much yet.
Since I sent this last email she has also started calling the pets by both their names (Dexter, Rainbow and Sophie) and calling them “cat” and “dog.” She’ll say their name a couple times to their faces – ”Dedder! Dedder!” - then look at us and say, “Is a cat!” Or , “Is a dog, Sefsie!” She has a lot of conversations with the cats and sings to them hugs them a lot. In fact, she just told Dexter, “S’raining. S’wet. Dedder. Ears a tail.”
She is also using more adjectives – wet, dirty, dark, loud, big, little, hot.
Also more drawing and telling us what it is, which is wonderful, and we have been getting some actual hugs. And there has been less hitting. A little bit more listening to directions, but you still have to make it very casual and ”by the way…”
She is still pretty much doing things on her own terms, but we’ll here her in the other room talking or playing or having conversations and it is almost as though she is rehearsing the stuff that she is going to let loose on us a few days later.
This morning it was throwing a pot lid on the floor with a giant crash. “Oh, that’s too loud!” she would say (and clearly that’s me talking.) Followed by: “That’s OK! I do do it again!” CRASH! She repeated that scenario 4 or 5 times. The second part of that conversation has never actually occurred, yet, but it’s nice to be warned. It’s like the whole eating with a spoon thing – she wouldn’t try, wouldn’t try, wouldn’t try until one day she picked it up and did it extremely well.
Really, I could update every day, but I’ll try to restrain myself. Like we said, we’re not trying to polish things up or talk our way in or out of any decision or recommendation - I’m sure M___ would say that Quinn is a surly little mess.
I was telling Michael this morning, “Being at therapy with Quinn is really tough because it’s as if they are trying to change her.” Which, duh, they are, but it is just really odd to go through it when she is so obviously awesome in every way. If only she would talk to Miss M___ – maybe I should have M____ put on a cat costume…
Well, I know you are busy so I hope I haven’t bored you or held you up with my extraneous information.
June 28, 2007 – 27.5 months
Good morning! (to a friend)
So, in the world of insurance and medicine, a realm with which I know you are all too familiar, I called to set up all Quinn’s insurance stuff for her medically extensive autism screening/MRI/psychological and physical tests today, only to discover that the doctor to whom we were referred by Dr. XXXX has absolutely no affiliation with our insurance whatsoever and it would be almost entirely out of pocket. How hard is it, if a doctor is making a referral, to take an extra two minutes to refer a patient to someone covered by their insurance? Every insurance company has a list of providers on their web sites, it just wouldn’t be that hard. So, that’s 6 months of waiting to see a specialist basically down the toilet because we don’t have thousands of dollars to shell out for what would probably be inconclusive results anyway.
If I hear one more person say, “characteristics consistent with blah blah blah” I will scream. Yes or no? This or that? Spit it out, people! And what doctor isn’t under Blue Cross Blue Shield? It’s just all so stupid. You know what insurance I want? “The Shield” insurance. I need something done, Vic Mackey goes in and beats the f*** out of some doctors until they do it. That would rule.
So, I’ve spent the last few nights up crying again at all hours with no provocation, but at least it makes my stomach stop hurting for a day. I finally realized that I never really let myself be sad, because in the world of up north, Lutheran, bootstrap-pulling Jacobson Town, the only reason you feel sad is because you feel sorry for yourself. And there are people worse of than you, so why should you get to feel sad. Nut up! So I don’t generally let myself get sad, because that is just self-pitying weakness and there is no excuse for it, Mrs. White Lady with Fully Ambulatory Limbs in the USA.
But I finally had the revelation that I’m not feeling sorry for myself, I am just sad because sad and terrible things have happened. In and of themselves, these things are sad. I’m not comparing these events to what other people have had to endure or not had to endure, they just make me sad, and that is fine. Not that I’m going to start crying all the time like some straight up p****, but you know what I’m saying. I don’t have to feel guilty about feeling sad, because it’s not all, “Boo hoo, poor me!” It’s just shit that is sad, dammit! So I’m going to cry for baddish stuff that happens to me sometimes instead of only thinking it is OK to cry at Scrubs and Oprah and the end of Homeward Bound. (Come on Shadow, you can do it!)
Conversation with Elly:
Me: Hey, do you need me to take you shopping to get something for your dad for Father’s Day?
Elly: Naw, I got him that Cormac McCarthy book that Oprah recommended.
Me: Uh, OK.
Conversation with Quinn, who is watching sharks on “Finding Nemo”:
Me: Hey sweet girl, what are you watching?
Quinn: Airplanes.
Me: Those aren’t airplanes, those are sharks.
Quinn: Airplanes!
Me: They have mouths and they are in the water. They are sharks.
Quinn: Airplanes!
Me: Shaaarrrrkkks!
Quinn: Aaaairplaaaaanes. Airplanes!
At which point I wonder where adorable toddler confusion ends and chain-yanking begin.
July 7, 2007 – 28 months
Good morning (case worker),
I left a phone message for you today (Thursday), but it may have been too rant-y to be comprehensible.
Essentially, I had called Blue Cross Blue Shield to check out all our insurance stuff before Quinn’s neuropsychology appointment with Dr. XXXX on July 19, and Dr. XXXX is not a part of our network (or whatever), although the helpful woman at Blue Cross Blue Shield did offer me the names of several pediatric neuroSURGEONS, because, as she said, it’s pretty close to the same thing. This is why I was so rant-y.
Anyway, with the progress Quinn has made, I don’t know that I rationalize the financial aspect of going through with that assessment when it may not be at all useful. Anyway, I just wanted to consult with you and see what your thoughts are and what the other options are before we make any final decisions on that appointment. You had mentioned some other options that may be open to use as far as getting additional diagnosis, but I’m so baffled at this point my tired brain can’t pin them down.
July 6, 2007 – 28 months
We have our FIRST QUESTION!
Hey everybody!
Just wanted to send a little update on the adorability of Quinn, who seems to be growing at the rate of a week per day.
This morning, at the zoo, she looked at a big snake and asked me, “What he doing?” Unfortunately, there wasn’t a very exciting answer because those snakes don’t do much of anything, but I tried to make the most of a snake lying perfectly still and possibly sleeping. Or dead. But that’s the first time she has asked a question like that – I almost started crying, but I was surrounded by giant snakes which kind of diluted the moment.
And, in front of the tiger cage, we had the following conversation:
Me: Look, a tiger!
Quinn: Tiger! A eyes!
Me: Yes, he has big, yellow eyes.
Quinn: Has a teeth!
Me: Look at his big teeth! His mouth is open and his teeth are so big!
Quinn: Is a cat!
Me: Yes, he is a big, big cat.
Quinn: He can fly!
Me: Um, no, he can’t fly.
Quinn: Walk!
Me: Yes, he can walk like a cat.
That’s about it. Now I am going to slump in a chair and sip a diet Coke and get over 2 hours at the 150 degree zoo.
July 19, 2007 – 28 months
Hey everybody,
Just wanted to drop a note and update you on baby Q.
She had her first of a series of appointments with a neuropsychologist today – an appointment we set up at the end of January when her situation seemed far more dire than what it does today.
Enter the doctor’s office:
Me: Hi! I’m Jahna Jacobson and this is Quinn. We have a 9 o’clock appointment.
Receptionist: Well, Hi Quinn! Don’t you have pretty, curly hair!
Quinn: I want to go home.
Talking through a window is a bad sign as far as Quinn is concerned.
So, we spent about an hour there with the doctor and she just watched Quinn play around and asked me a few questions and looked over the evaluations that I badgered all the other screeners and therapists to send her.
Her current impression is this:
Quinn is out of the woods as far as any seriously debilitating or severe or moderately severe or moderate or semi-moderate autism is concerned. Her feeling, based on everything so far, is that Quinn may have Asperger’s based on her past behavior and history up until this point. Quinn will have a couple hours of various screenings at the end of August to pinpoint some of her weaker areas and to reassess her development. She is still lagging behind where she should be, but it doesn’t appear to be a “pervasive disorder.”
So far, she said, Quinn is closing the gap when most kids with the areas of concern we had a few months ago would be falling further behind.
She also advised me that Quinn no longer requires me to stay up all night crying or giving myself an ulcer. Doing non-stop internet research and regular vomiting have also been deemed unnecessary. As productive as all of that has been, I am willing to try to take her advice. I have been given permission to stop freaking out, and she said, “You can just be a mom. There are professional people around her who can handle everything else.”
So there you go.
She said we could maybe expect some OCD behaviors, and said it would all be manageable. I said, “I think so!” Then I reached in my purse and touched my car keys to make sure I hadn’t locked them in the car. Then I checked them again. Then I took my hand out of my purse, then reached in one more time to make sure I hadn’t accidentally snagged the car keys and thrown them on the floor without noticing. Then I put them in my pocket. Then I touched my pocket to make sure they were in there.
Well, off to go momming,
July 23, 2007 – 28 months
It’s jahna.
I need to run out of the house sans childrens, because I’m going berserk. I might just go running down the street, screaming, at any given moment. Summer vacation is about a month too long.
(A mother spends long weeks looking forward to the 36 hours of peace the new Harry Potter book should buy her, then the child just putters around all weekend bugging the crap out of me while I’m all, “Read your book! Read that book! Read it! I’m going to read the last chapter and tell you how it ends if you don’t get out of my hair this instant! Go! Read! Git!”)
(Although I didn’t read the end, I did delight in telling her that I had, and that, in fact, the last line was, “Then Harry Potter exploded for no good reason. The End.”)
July 31, 2007 – 28 months
I realize it has been such a long time since I sent you a one-on-one email that I actually have to ask, “So, uh, what’s going on?”
As for me, I am going to lose my mind if I don’t figure out how to sleep without crying.
Which leads me to Quinn starting school , which is just about ripping my heart out. I am going to miss her so much, and I just swing wildly from “having to put her in daycare is just selfishness on my part” (Utterly stupid, I know, and I need no reassurance or support in this area. I have accepted this as an inevitable and ridiculous emotion) and the far more logical and realistic, “Well, she is going to be in some kind of therapy four days a week anyway. Der. So let the child go to school and play.” Since she’s at Discovery Gateway/Pearl Nelson, her therapists will just go get her out of class, do her therapy, and take her back.
Last speech therapy, Quinn kept saying, “Out? Out?” because she is in a big high chair, and Marsha said, “Not until we’re done.” To which Quinn repeatedly commanded, “Be done! Be done!”
And she waved goodbye to Michael this morning. And I cried.
Everyone says going to school will be the best thing for her, but man, I’m not the mom I used to be. With Elly I was all, “Go! Get out there! You can do it!” With Quinn I’m all, “Come sit on mama’s lap and we’ll eat cookies and watch TV together.” And I know that’s how the baby of the family generally ends up being a total pill. So, I am trying to adjust my parenting so I have a more aggressive and encouraging attitude with Quinn, while still taking into account that she is different and needs different things. But she is such a cuddly little Cinnabon it is super hard!
Elly starts school on the 20, Quinn on the 21st and I start on the 28. Elly gets out at 2:15, and they prefer that the toddlers aren’t picked up before 2, because that is the most structure-y part of the day. I swear, I won’t know what to do with myself.
And that’s about it from Hatton Manor. Except that Michael found an 8-foot door for the downstairs bathroom and installed it, and it makes our toilet seem ridiculously teeny. Like an elf toilet.
Talk to you soon, Jahna
August 20, 2007 – 29 months
Hey everybody,
What Quinn likes: Chips!
What Quinn doesn’t like: Neuropsychologists!
Quinn will have her first official day at school tomorrow. Her school actually started today, but she had an appointment with the aforementioned neuropsychologist, who as the uncanny ability to make Quinn scream for a solid hour simply be showing her a drawing of a shoe. The doctor’s diagnosis based on today’s appointment (and the identical appointment we had last week) is that Quinn is two years old.
So, we may try it again in a couple months after school has, hopefully, made her a little more receptive to drawing of shoes and other implements of neuropsychological torture such as blocks, crayons, toy cars, farm animal picture books and plastic spoons. If you give Quinn this stuff and leave her alone she will play and sort all day. If you ask her to do something specific, she is going to cry and say, “All done! Car go home! Bye bye!”
As for school, Quinn consistently screams her head off when I take her into her classroom, but her speech therapist Marsha has had pretty good luck taking her in there for her sessions. (She actually asked for M___ today at the doctor’s office…) It’s the rare two-year old that doesn’t have an adjustment period when they start school, so I’m not getting too wrought up about it. She will have therapy three or four times each week, so I think mixing the old and the new will help her settle in.
Today while I was in the waiting room at her school during speech, all the moms were talking about older kids’ first day and what they were planning to do and how the first morning went. Then in walked Jennifer, whose 4-year-old son Marcus, who has Downs Syndrome, is a much-loved fixture at the center. But she didn’t have Marcus with her, because he started pre-K at another school this morning. But Jennifer just didn’t know what to do with herself, so she came up to hang out in the waiting room with the rest of us. We all had plenty of suggestions of what she should be doing with her first day of free time, and by time I left I believe she was contemplating going to a matinee movie, since she hadn’t been to a theater in four years.
August 22, 2007 – 29 months
Hey everybody!
Just wanted to let interested parties know that Quinn had a good first day at school.
When I went to pick her up, B___, who runs the day care program, said, “She did just great! I went in with her for a little while, then E____ (dev. therapist) saw her for a while, then we called M____ in, then I went back in with her, and she did just fine!”
So, they had a small army poised at the ready, and maybe she was a pill all day, but they had it under control. It’s a really good school – whenever a child arrives or walks down the hall everyone from the receptionists to the therapists to the accounting department knows them and greets them by name.
This morning when I got Quinn up and said, “Let’s get ready for school!” she said, “Mama be right back!”
Sept. 21, 2007 – 30 months
Hey everybody!
Ok, it may seem as thought you have received this email before, but today it has truly and surely come to pass: Quinn has been officially cleared of any and all signs of autism or related disorders.
We had a screening this morning with several experts in what they call the “specialty clinic” program. Several people were there including Quinn’s case coordinator and her developmental therapist and a developmental pediatrician and some kind of neuro-psychologist and some other people. It was a full-on panel. Luckily, they had some stinky carpet glue problem in their building so they were doing all the assessments at Quinn’s school, which means Quinn was calm and comfortable and did some puzzles and put pegs in holes and named some pictures and colored and charmed everybody with her silly dancing and general adorableness. Then she told them all bye-bye and said “Purse? Car? A go home?”
Everyone agreed that A.) She is just the cutest thing ever, and B.) She is far too social and adorable and well-adjusted to be considered on the autism spectrum and C.) She will probably need to go into a gifted program once she deigns to speak to us in full sentences.
So, while I am celebrating the good news, the rest of you can celebrate never, ever receiving another autism related email from me ever, ever again.
Thank you to all of you for being so great and listening to my frantic complaining for the last nine months. I know at times it must have seemed as though I was all crazy about nothing, but it is hard to be looking for some answers and feel as though no one who has them wants to commit to saying anything. Well, now they are committed to the “all clear” diagnosis.
Thank you again everybody for being so supportive and not telling me to just shut-up already,
Jahna
——————-
Of course, that wasn’t actually the end.
When we told all of the people on Quinn’s therapy team that she had been given the all clear, their response was, “Wow, she must have had a really good morning.”
She tests well, I think because she turned into a bit of a ham and has the intellect to accomplish what is asked of her if you catch her in the right mood, but her day-to-day people who deal with her downtime have a better picture of her ups and downs. The numbers and the experience tell different stories.
Quinn continued with therapy until she was 3 and aged out of the Early Steps program. Then she was tested and they determined that while the numbers put her at borderline for continuing with special education through the school, her anecdotal progress pointed to continued improvement. So we signed her out of the public school assistance and continued forward on our own.
