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Love, I think perhaps your Dad and I have sent you some mixed messages. It isn’t fair to you that we’re inconsistent like this – how will you ever really learn what is okay and what’s not?
Please, let me try to clear things up a bit.
On using the potty. I know you’re scared to use the toilet without a potty insert. And I know you are a big girl and think that peeing in diapers is for babies. However, that one day recently when we let you pee in Grandma’s bathtub since you were afraid of the toilet nor did you want to pee in a diaper – that was a one time thing.
It’s not OK to pee in the bathtub anymore. Especially especially the bathtubs of our friends’ houses.
Please go back to using the toilet.
(And forget about the floor.)
On being naked. I don’t know where you came up with the idea of being the Naked Monster, but it is pretty funny. Mom and Dad can’t help but giggle when you strip down to nothing and shout, “I’m the naked monster, roooaaaar!!”
However, that is not something you do in the front yard. I know, I know we always laugh inside and chase after the little naked monster, but it’s just not the same thing when we’re out on the street.
Naked Monster needs to stay inside the house.
I hope this note clears things up for you a bit.
Love,
Mom and Dad
Remember when I wrote about the ooglies we’ve been seeing recently around Chez Goodfountain?
It’s true that the new blanket swing did help. For a time.
But, to tell the truth, nothing has really changed since then and Charlotte has been frustrating me to no end. There’s the endless sensory seeking, which is especially tiresome because someone always ends up getting hurt.
There’s also a seeming lack of impulse control and general just not listening. Telling her 51 times to put her shoes on so we can leave the house. And let’s not forget the screaming.
Recently, I went out to dinner with a friend who has two sons on the spectrum and she has been doing some light biomedical treatments (GFCF diet, supplements) with them. As we were talking, it became clearer and clearer.
I think Charlotte is having a reaction to all the dairy she’s been consuming.
I won’t bore you with a full recap of the GFCF diet and the IgG testing and rotation diet that followed last year. Suffice it say that upon reintroducing the long list of foods we had eliminated, we saw no issues with anything but Soy and Peanuts.
How we knew these were a problem is that anytime she has either (not just a taste, I mean a significant amount) she gets wonky. Wonky as in what I described above.
The reintroduction of all the “offending” foods was last December, about 5 months ago. Charlotte has never been much of a milk drinker (just the random cup of chocolate milk here and there), she would eat the occasional bit of string cheese, and we have pizza on Fridays. A fairly minimal dairy intake. Not even daily.
My point being is that if dairy were an issue, it’s very possible that we wouldn’t notice because her dairy consumption was so low.
A couple of months ago she started wanting to drink chocolate milk with her breakfast daily. I didn’t think anything of it. I was actually glad because it’s milk and I’m generally in favor of milk consumption for calcium (although she does take calcium supplements too).
Somehow, slowly, ice cream frequency was upped too. Instead of just on Fridays, it became the whole weekend. Then she’d ask for a bowl on Wednesday (“Can we pretend today is Friday and have ice cream? Please?!”).
Ice cream turned into ice cream treats (sandwiches, drumsticks).
Charlotte was becoming obsessed. She wanted it all the time.
Culmination came on a Sunday morning when she sneaked downstairs and quickly tried to cram an ice cream treat into her mouth before anyone found her. Happened again the next day.
My gut tells me I’m right about this. That too much dairy makes Charlotte wonky.
She is now more than a week without milk and nearly a week with no ice cream. I did go ahead with pizza this past Friday. I don’t think Charlotte has zero tolerance for dairy, I do, however, think that it needs to be kept pretty minimal.
The last few days, as the dairy is leaving her system, has brought back the return of non-verbal communication. I’m talking head nodding and shaking, dramatic gestures, pouting.
A sudden increase (or perhaps beginning usage) of non-verbal language was the first and most dramatic thing we noticed when we originally took her off gluten and casein last September.
I don’t always realize non-verbal language is missing until I start to see it. It’s so noticeable now the way she’s folding her arms over her chest to show her frustration at me insisting on fixing her hair rather than screaming “Noooooooo!!!!” at me.
The eye contact that accompanies the nodding of the head is striking.
I don’t intend to hold a strict no dairy policy. Next week at her preschool graduation party slash ice cream social she’ll get her ice cream. It will be kept to special occasions only. Milk, however – totally gone.
I can’t explain it, and I’m pretty sure I’m not imagining this, but dairy has some kind of weird effect on Charlotte.
My were we busy this weekend. A great deal was accomplished, though, and for that I am oh so happy.
Unfortunately we were not too patriotic this weekend. I feel a bit guilty about that, but there is time enough to teach the kiddos about the reason for the holiday and to establish some Memorial Day traditions.
That would be nice.
I did a lot of work in the garage this weekend and both girls liked joining me out there. A radio station has been doing non-stop 80s music all weekend, so it made the hours I was out there counting and packing and taping things up bearable.
Last night Sarah sneaked out and we danced to Love Shack and I don’t know that I’ve ever seen her laugh that hard at a song. Especially at the “Tin Roof!” at the end. “Again!” she hollered. Maybe I’ll have to download that for her.
I was back at the taping and counting this afternoon amidst a spring rainstorm. Sarah, clad only in t-shirt and undies, put on her rain boots and stomped around in the rain. It took some convincing, but eventually we got Charlotte out there too. Wearing her raincoat, or course.
Sarah eventually donned shorts, doffed the rain boots in favor of her fleece-lined Crocs, grabbed an umbrella and proceeded to collect flowers (weeds) from the yards.
At first I was a bit firm about staying in the driveway, not on the street. The best puddle, though, was the one along the curb where the driveway meets the road. Thinking that I don’t want them to think it’s okay to play in the street, I was nagging about getting back on the driveway.
Then I thought, oh, what the hell. I’m RIGHT here. We live on a cul-de-sac for goodness sake, and it’s doubtful any permanent harm will come from letting them jump over the puddle and onto the street.
Eventually the umbrella was dropped, the rain coat was cast aside with both pair of Crocs and we had some barefoot playing in the rain.
Barefoot.
A pretty big deal for these two little princess-y girls who are not ones for liking the dirt. Or the grass. Especially on their bare little toesies.
For what was pre-determined to be a work weekend rather than a true holiday fun weekend, we ended up having a pretty good time. Rain, work and everything.
Happy Memorial Day!
Charlotte tends to take what she hears very literal. This is common in the world of Autism Spectrum Disorder, and many parents probably have a humorous story or three they could share about it.
I’m not mocking Charlotte here. I just find that it’s better to have a sense of humor about some aspects of her quirky communication. What’s the alternative – sadness? Eh, who needs it?
Here’s a peak at today’s hilarity:
We’re at the playground and a Grandma is pushing her 8-month-old granddaughter in the baby swing. Charlotte is quizzing talking to the grandma about the baby Sophia. “Can she talk yet? Does she have any teeth? Can she walk yet?” Repeat.
In an attempt to redirect the inquisition, I told Charlotte to try to make the baby smile. Grandma-lady says that Sophia loves to laugh at peek-a-boo.
Charlotte covers her face and shouts “peek-a-BOO!” Little Sophia barely cracks a smile. So Grandma leans in, and in that sing-song tone that goes hand in hand with talking to a baby, starts sing-saying, “Where’s Sophia?”
Charlotte’s head whips around.
She points at Sophia. “She’s right there.”
Grandma keeps it up.
“Where’s Sophia?”
Charlotte keeps it up.
“She’s right there.”
“Where’s Sophia?”
“She’s right there.”
Where’s Sophia?”
“Right there.”
“Where’s Sophia.”
“She’s RIGHT THERE.”
Hilarious.
Literally.
Summer’s coming and we’re getting ready.
To tell the truth, I’m about sick of schlepping Charlotte off to school 4 mornings a week, what with how joyous are mornings can be. We need a change in routine before we all go a little crazy.
One thing I know about me, though, is that I need a plan for summer. I don’t do spontaneity well. My girls don’t do spontaneity well. This is evidenced by the fact that it’s nearly impossible to get them motivated off their duffs for a spur-of-the-moment trip to the playground. Yesterday I finally gave up and let them just keep playing with their princesses. It wasn’t *that* warm (low 60s) anyway, and I knew it would be warmer today and the rest of the week.
I did things differently today. First, I laid out a plan for Charlotte (and Sarah, but Sarah isn’t quite as non-spontaneous as her sister). I told her that before lunch she could watch a show, then we’d eat lunch, then we’d go to the playground.
She suggested, and I was quite proud of this, that she’ll just leave her socks and shoes on so she’d be ready to go. Great idea, kiddo!
After lunch was finished and the mandatory arguments about the necessity of using the potty before we leave were over, we actually made it out the door! Success!
All proof that Charlotte needs time to process and a structure laid out for her. Yesterday I sprung it on her while eating lunch that it was a nice day and maybe we could go to the park. She seemed enthused, but after eating wandered off to play and no amount of cajoling could get her going. Or Sarah.
Charlotte probably had it in her mind that after lunch she was going to play with Beast and Belle in the castle and so there was no deterring her.
A little rigidity anyone?
All this to say that we need a plan for our summer days. We really aren’t fly-by-the-seat-of-your-pants kinda peeps.
Tangent: A few months ago I went to see Temple Grandin at a book signing where she gave a little talk. It was great to see her *live and in person*. One of Temple’s suggestions for parents is to make sure they help their Autistic child develop her talents and strengths, not focus solely on remediation. She said she feels the Autistic persons she has seen that do the *best* in life were the ones who had their gifts and talents nurtured.
So with Temple’s words in my brain, I have planned activities both therapeutic and just plain fun. On the therapeutic side, Charlotte will be in a six-week social skills group along with her regular weekly OT.
A little less therapeutic, a little more fun, will be tumbling. She likes it, and it’s good for her. She’s not delayed in gross motor skills, but she’s not exactly setting the sports world on fire either. Tumbling will be good.
Sarah and I will take another Mommy & Me tumbling class at the same. Is it bad that I look longingly toward her being 3 and able to take classes independently?
On the totally fun side, and in the spirit of nurturing her strengths, Charlotte will do a week of Steel Drum camp. Yes, I’m letting my almost-5 year old learn how to play the drums.
The camp and classes provide a nice framework for each week, but there’s still the matter of the rest of our time. The hours upon hours that we’re not at OT, or not at tumbling, etc.
I’m picturing a giant poster board hanging in the kitchen with a loose schedule for each day. Not so much about the times per se, but about the flow of the day. Including some time for Mama here to flow into some housework and laundry. If I don’t schedule that they’ll have me playing Dominoes and Yahtzee all day.
I don’t particularly relish the idea of organizing our days *that* much but I also, and even moreso, don’t relish the idea of cajoling and pleading these girls into a trip to Target or a park outing.
Just curious, how do you *do* summer? Spontaneious, go with the flow, or scheduled out?
Wonders never cease.
Friday nights are traditionally pizza and movie night in our house. However, yesterday (Thursday) we spontaneously went out to dinner at an “Italian” (a descriptor I use loosely in this case) restaurant. Charlotte ordered a pizza for dinner.
On the way home I asked her and Sarah what they wanted to do today (Friday). Any special requests? Charlotte says she wants to eat pizza and watch a movie (like, duh, Mom, it’s totally Friday).
I say, “Well, we had pizza tonight so I think we’ll skip that tomorrow. We’ll have something else to eat with our movie.”
That was the end of that. Or so I thought.
Later that night as she was laying in bed drifting off, her Daddy asks her, “Charlotte, what are you thinking about?”
She never responds to this question which has been asked of her many times.
This night she responded.
“I’m thinking about a conversation.”
He follows up: “A conversation about what?”
“About having pizza for dinner tomorrow.”
I don’t even think I can tease apart the many layers of that that exchange.
It was some kind of wonderful though.
And, what the heck, two nights in a row of pizza isn’t gonna hurt anybody (least of all Chef Mom here).
What’s that thing people say about how it’s darkest before the dawn?
Or, as it relates to kids who are on their own developmental timetable – it’s can get a little ugly before a developmental burst.
I haven’t talked much about the latest round of the ooglies that we’ve been living with here. Mostly because I know from experience that ‘this too shall pass.’
In Charlotte’s case, the ooglies (do you love that word as much I do?) center around screaming, massive sensory seeking behaviors, screaming, a short fuse and did I mention screaming?
I’ll spare you the gory details. Many of you have a version of the ooglies that has played out at your own house. Who needs to hear about mine anyway?
Trouble was, it seemed our typical arsenal of sensory-pleasing tactics that, heretofore, seemed to help Charlotte get back on track, just wasn’t cutting it anymore. Our swing and trapeze had to be moved out because Charlotte and Sarah were getting a little too brave with them. I didn’t feel they were safe anymore.
Always up for a challenge, the clever husband created a crude blanket swing which now hangs from our indoor porch swing frame.
I can’t say that the blanket swing was a sensory charm and Charlotte was magically back to her old non-seeking ways. But I can say that suddenly she had a new place to go to escape and calm down. We were able to tell her that if she’s upset and needs to relax, go get in the swing. We incorporated intervals of swinging into each day.
Within a few days, truly, much of the negative behavior had stopped. She’s only 4 going on 5, though, so she still gives me plenty of arguments and shows off her defiance phase with great regularity each day. But I’ll take that over biting (clothing, not people), hitting and screaming any day.
But with the resolution of the over-the-top behaviors dawns something new. Another big burst in her language. It seems to work like that. Big gains in language followed by months of status quo and then another burst.
The latest bursts can be seen in two areas. The first is in communicating with us about her day. Until recently, if you asked Charlotte how was her time at, for example, a friend’s house. She’d say, “It was good.” Specifics about what she did rarely given.
Now that same question will be responded to with a near-perfect accounting of every single activity in which participated or that she witnessed. The most minute of details are included (e.g. I got in the car, then I put my seat belt on, then Mommy shut the door, then Mommy got in her seat, then she started the car, etc..).
Impressive for a kid who two weeks ago couldn’t tell you more than two things she did in the last hour, much less 82 things she did the entire day.
The 2nd change has been in her playtime with Sarah. It has gotten exponentially better. This means longer. More elaborate. And, most significant, is that Charlotte is adapting. If Sarah changes the direction of the play, Charlotte changes with her.
Before now when Sarah changed the direction of play, Charlotte would just fade off and continue playing along whatever storyline she was into. Now she is flowing seamlessly from cooking in the play kitchen to taking their baby dolls for walks in the stroller to Dora and Diego rescue mission. Some change initiated by her, but often led by Sarah.
This is one of those things I didn’t realize was missing. I knew that Charlotte didn’t maintain interactions for long, but I didn’t connect that often times the fading happened when her playmate would shift to something new. Now I can see that it was those changes in the play routine that she wasn’t following.
And now she is. She’s showing an ability to adapt and not have to -gasp- be in control of every little thing.
Very cool. I just love being witness to such a remarkable little person.
I write tons and tons about my children and being their mother, but I don’t often mention my own Mother.
For this Mother’s Day, I’ll tell you about her.
If there was a contest for best Grandma, I think my Mom would get first prize. She really is great – going above and beyond.
For starters, she makes an effort to visit us at least once a week, mostly driving the 45 minutes to us because it’s just easier that way. She also is willing to provide babysitting services as often as I need. I would be lost without that!
But her grandma-ing goes way beyond visiting and babysitting. She is truly involved. For example, just this morning she said, “Can you explain to me just what is Asperger’s, because I want to know exactly what that means?” She has been through this whole “language delay-sensory processing-Autism” thing with us from the beginning.
When we first realized Charlotte had language issues and began speech therapy, Mom was supportive and interested from the get-go. She changed her way of communicating with Charlotte right along with us. She read all the articles I would send her, and was very quick to sing Charlotte’s praises each time she’d see changes in her communication.
As Charlotte’s mom, for me, it was so nice to have someone else to talk to about all this stuff. Someone who would listen to me babble on about the nitty gritty details. Someone who knew Charlotte and wouldn’t just offer trite platitudes. Mom has been genuinely interested and curious to understand Charlotte’s differences. I appreciate that so much.
I also appreciate that Mom recognizes when she doesn’t have “the answer.” You know how sometimes a veteran parent will say, “All you need to do is [this] and your kid will shape right up.”
Not my mom. She realizes that sometimes what we’re dealing with with Charlotte is not typical and that standard parenting advice just isn’t going to cut it. Not once have I heard that we’re too lenient (well, once we did, but that is actually a funny story), or that we need to be stricter with her, or that we should just let her cry.
She knows that the typical parenting methods don’t work with our non-typical kid, and she supports our adaptive parenting style.
She’s equally as terrific with Sarah who Mom loves to refer to as the mini-me of yours truly. Apparently Sarah gets her crazy, wild-child ways from me. Lucky her, I say. Look how fantastic I turned out, after all. <insert hilarious laughter here>
Mom sets a great example for mothering in many ways. But the way that stands out the most to me is this: She always put her children first. Growing up as a kid and now as an adult – I know that my Mom is always there for me. That I can always turn to her if the need arises.
Mom and I have always been close. That’s not to say we don’t have stupid arguments occasionally, but for the most part our relationship is rock solid.
It is my hope, now that I am a mother, that I develop that same rock solid relationship with my daughters.
There is something quietly reassuring, and incredibly empowering, about knowing there is someone out there who’s got your back. No matter what.
No matter what.
Happy Mother’s Day, Mom!
I don’t think I was expecting a difficult IEP meeting today, but I walked away pleasantly surprised at how easy of an experience it actually was.
What I was expecting, I think, was that everything would be very negative and focused on all of Charlotte’s deficits.
Instead, the language in the MFE results document (which I read on Wednesday) was peppered with the positive.
“Charlotte is thoughtful and considerate of others.”
“She has a great memory and attention to detail.”
“Charlotte is a sweet little girl.”
“Charlotte has very high academic abilities.”
I can’t tell you how much easier it was to swallow the pills of deficits when it was very clear to me that the team recognized that she was not simply a child who was behind in social language and language processing.
Perhaps my favorite line in the document, though, and the one that helped me see the true purpose of this IEP process:
“She will need support … [blah blah blah] … to enable her academic abilities to be translated into academic success.”
In a nutshell – isn’t that what it’s all about? We want Charlotte to succeed at school to the fullest of her abilities.
The accommodations are pretty straightforward. An aide who will watch her (from a distance, not hovering — actual IEP wording) on the playground and ensure she gets on the right bus and off the bus to the right classroom. Safety first. This is important as she is a bit of a wanderer (I’m sure many of you can relate).
Speech goals to work on reading comprehension (i.e. story retelling) and also the pragmatics/social stuff.
She’ll be part of a daily sensorimotor group for sensory regulation and she will get sensory breaks as needed. Not sure what that will look like yet.
And, lastly, there will be special ed instruction for Reading and Writing Centers. That part is fuzzy to me. I asked them to paint a picture for how that will be incorporated into the day, but it’s hard for them to say until they see the details for next year – her teacher, the class routine, other sped needs, etc.
The intention is that there will be 15 minutes per day for that. How that will actually play out is a mystery, but the team’s confidence that she will get the help she needs is inspiring.
As is my plan to volunteer in the classroom regularly and see for myself. I’ve already worked out a deal with my Mom to provide regular babysitting of Sarah so that I can be at Charlotte’s school
The all-knowing They say that if you want to know how your kid is really doing at school, you need to be there.
15 minutes per day doesn’t seem like much for sped instruction, but her needs are fairly minimal. And if she needs more, she’ll get more. So far, the school has been great to work with, so I’m going to trust that if her needs change, they’ll meet them.
The Kindergarten IEP is done. Hip hip hooray.
Now, let’s get ready for summer!
The day that I knew was coming came.
Yesterday I read, in black and white print, Charlotte’s diagnosis, provided by the school.
Asperger’s Disorder.
It wasn’t as stark and harsh as that. It was delivered in a sentence, embedded in a paragraph filled with both the positives traits and the deficits observed in my little girl.
“Recent assessments of her using the ADOS and ASDS support that Charlotte falls on the Autism Spectrum at this time. It is this examiner’s opinion that a more accurate diagnosis of her condition would be: Asperger’s Disorder.”
In a previous section there are official numbers and scores that don’t mean much to me just yet. We have the IEP meeting tomorrow and I’ll get more info then.
To be honest, I’m not too concerned about the actual numbers. Oh, to be sure, I was at first. I needed to know just what they meant.
Wise word from Twitter friends reassured me and helped me put things in perspective.
“…remember that it’s just a snapshot of this ONE moment in time. it doesn’t describe who she is or who she will become.”
“…still the same sweet Charlotte.”
All true. Today was just another ordinary day.
As I was reading the report from the speech pathologist and the psychologist, I couldn’t disagree with a single thing they observed. I’ve observed them all myself.
She doesn’t always make strong eye contact. Yep, she scripts a fair amount. Echolalia is present. Conversations are often short. It can be a struggle to communicate with her.
The difference is she is at school 10 hours a week, and with me about a gazillion hours a week (or, at least, it feels that way sometimes). So during all those hours we’re together – I see lots of initiated conversation. The flat affect disappears. It’s not all echolalia and scripting.
In short, what I read in the MFE is not the whole picture. Charlotte is not the sum total of who she is at school.
Thank goodness, right? Is any one of us the sum total of how we are at any one time? At any one place? In any one situation?
But, the Charlotte who attends school, she needs some assistance. Her neurological wiring is different than most kids, and she isn’t going to achieve academic success the same way.
So there it is in black and white. Labeled as disordered. No, it doesn’t thrill me. I’m not happy about it. What mother wants their child to have any kind of disorder – autism, Asperger’s or other.
But I am feeling grateful. Grateful that Charlotte was born in this era when her “disability” is recognized as a difference and the tools exist to support her.
And so we move forward. Charlotte is Charlotte – the same yesterday and today. Making it “official” doesn’t change anything.
Except maybe for one thing.
1 in 150 has a new face.
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