Tuesday, December 30, 2014

A good day.

Have to mark this day.

barely any tantrums.
quite a bit of talking.
a nap after playing in our blanket cave.
talks and dances about snow.
3 different stores on our errands trip and no meltdowns.

a good day.

Wednesday, December 17, 2014

Our Happy Place

On my darker days, I need to keep this image on a loop in my head. Just a perfect moment on an ordinary night with my extraordinary family.

Saturday, November 1, 2014

Happy Awesome Day!

Today is my two-year anniversary of my ASD Diagnosis and the future's so bright I gotta wear shades :)

Monday, September 15, 2014

My Mission is Clear

My mission is clear and I am feeling calm when I think of the future. This is a big deal. I really felt I needed to document this moment. I hope that I will remember to read this entry the next time I am consumed with existential anxiety.

My daughter is happy. She is healthy. She was built to be naturally incapable of "people pleasing" ( admittedly an oversimplification of ASD). She struggles with spoken language because she will take in more visual information than I can ever dream of.

We have not been told by anyone "she will never..." We HAVE been told we have quite a bit of work with a few developmental areas BUT never told "never."

She is free to be...

Sunday, August 31, 2014

Good Day

There is an embarrassment of riches around me and I only hope that on my darkest day I am not too blind to see them. Spent an amazing day with my crazy little family. There was our little wildcard running screaming, throwing tantrums, throwing bigger tantrums, screaming so loud that quite a few people turned around to see who was being tortured-and it was an amazing day because all that stress really just warrants a small footnote on a great day. Being a "special needs" family is helping me turn down the volume on a lot of things and I am a worrier that generally keeps the volume up to 11. I'm not saying tomorrow I won't collapse into a puddle of tears but days like this really make me grateful for this crazy journey we are on.

Having lived a rather charmed life I have never really experienced something with as much weight as Sofie's diagnosis. Parenthood was kicking my butt by itself. Adding "autism" to the parenting equation left me feeling beyond inadequate. But days like today really have me curious about the future and not scared of it. Working with a teammate like my husband, that shares in my vision for Sofie and helps hold me up on my weak days and makes me laugh on the days in between (and really annoys me sometimes too-we are human).

Favorite moments from today:
*Sofie informing us the fiberglass dinosaurs at the museum are "Shy" and "no no talk" (unlike her beloved Dinosaur cartoon)

* Trying to explain to Sofie that she is not doing herself any favors by having a Jerry Springer Guest-level freak out in the butterfly house when you are trying to convince the volunteer you are calm enough to hold a butterfly.

*Sofie defending her insistence that we go into the museum snack bar to make sure there were no animals to see. As we left she said "it poppable (possible)" We agreed that it was possible for animals to be in the snack bar.

*Sofie having another Springer Meltdown in the gift shop when the cashier wants to see the little dinosaur she wants to take home.

*On the way to the car, Sofie joyfully repeating "Terrasaur, Terrasaur..." Which is accurate-it was a Pteranodon

Good Day.

Oh and as a little postscript to this entry...Sofie LOVES her new school. But that is worthy of its own entry.

Monday, August 25, 2014

Wednesday, July 23, 2014

Two Birds on the Spectrum

Quality Time Between Friends
In only a short week and a half, our little family has grown quite attached to our little pet bird. For me it has been a welcome reprieve from studying ASD and ASD therapy methods. I have always loved nature specials and have found the little details about caring for a bird really fascinating. It's funny to take such care with Sofie's Gluten Free/ Casein Free Diet and add to that a little bird's organic pellet diet. From what I hear it will affect how the bird acts as well. 

I really love spending time with the little bird. And I can't get enough of seeing Sofie interact with her "baby." It's really sweet to see how similar they are. And I couldn't help but laugh reading about cockatiels- Birds are animals with Autism OR are individuals with Autism humans with bird-like tendencies? I will give you a moment to recover from me blowing your mind.
A Happy Place
Here are some characteristics I have read about cockatiels (I don't want to generalize for all birds)....

-crave routine and can exhibit "behavioral problems" when in a chaotic environment

-love attention but you must learn to approach them gently and quietly. It is a good idea to present your hand so they can approach you.

-never just grab a bird. They will learn to be anxious with this approach.

-a great healthy balanced diet helps them be much more social and happier. Digestive issues can contribute to illness but also can make the bird withdrawn and reluctant to be held.

-always speak calmly. Even when you are disciplining a bird never yell. They will only get anxious hearing yelling.

-if you notice the bird sitting in a corner of its cage for a long period of time, open the cage and offer your finger. Gently move the bird to another area of the cage with a toy or take the bird out for some playtime. 

-birds that spend long days by themselves without any human or bird interaction become withdrawn and will startle easily when someone does try to interact with it. 

-often misunderstood as an animal meant to just look at in a cage, it can actually be incredibly affectionate when cared for by someone that understands the sociology of birds. 

-if possible, encourage your bird to fly in a safe environment. Encouraging flying will give the bird practice with using its wings and it will learn to fly strong. 

For those of us that love a little one on the Spectrum, these characteristics can feel a little familiar. I know that little Doodle feels like Sofie's spirit animal. They really look like kindred spirits. 

Going to bed happy.

Thursday, July 17, 2014

The Doodle Diaries

We have had a big week in our household! Sofie has gotten her long awaited bird (we named Doodle). It has been amazing to experience Sofie's first pet. We had decided to let Sofie stay at home with 'daddy' while 'mommy' went to pick up the bird from the breeder. When Ozzy opened the door Sofie said happily "A bird. A baby bird!" And when she sat down in front of the travel cage she said "I always wanted bird." It was AMAZING. Would never have dared to dream of their meeting going so well. And Sofie was so understanding of our little feathered friend's first day jitters. In the photo to the left you can see Sofie in mid babbling sentence explaining "I baby bird mama." We never imagined Sofie would grow so attached to this bird-so quickly!

It has also revealed a lot about how Sofie interacts with those she cares about. The first few days Sofie would check on the bird and gently stroke its tail feathers through the bars of the cage. She would sometimes randomly bring up that she had a bird. But she didn't smother the bird with attention or play too rough. She was always gentle. After seeing Doodle's temperament improve we got adventurous and had a play date in Sofie's room (ironically safest room in the house for Doodle). Sofie was ecstatic. Doodle flew and hid in the corner. I told Sofie that Doodle was shy. She then took her stuffed penguin and had it dance next to Doodle. She then took the penguin and went to another corner in the room to read a book with the penguin. It went on like this for a few minutes. Sofie then seemed to get mad at Doodle and started to have a little controlled tantrum. I think she was upset Doodle didn't attempt to engage her after her initial effort. I guess Doodle didn't get the memo. Because that is how Sofie's day usually goes. She will briefly connect to someone and then scampers away to do whatever self-directed task she has set for herself. Or sometimes she doesn't even make that brief connection but because the adults around her know how vital it is for her to learn to interact appropriately with others they do the heavy lifting and approach her. Doodle is going to make Sofie work for that connection in a way Sofie has never had to before. It's almost like a bird is tailor made for ASD therapy.

And it has been therapy for mommy too. I was getting quite anxious earlier in the week when the bird was reluctant to eat or drink unprompted. Aside from the usual parent fear of killing your child's pet, I think there was another element to my anxiety. This type of anxiety felt very familiar. I was feeling the anxiety I felt before the diagnosis when we would travel with Sofie. I was always worried about Sofie drinking or eating enough because she gave no indication she was hungry (no crying-nothing). A little cockatiel brought me back 'there.' It reminds me that we have come a long way but that I am human. And that along with those days-long-funks I can get in where I beat myself up for not getting Sofie to where she needs to be (wherever that is). I can also have an anxious feeling triggered AND talk myself back from the ledge. That's something to celebrate. Also I think I am a Bird person. I really loved having the bird play with my hair tonight. Never got the cat thing and I love dogs but I don't LOVE dogs. But I must say I love cuddling this little bird.

I think I can add Crazy Bird Lady to my resume.

Thursday, July 10, 2014

Insomnia Questions

Insomnia brought on the practical reason that my little lady is recovering from a sinus infection and I am hearing every cough over the baby monitor and envisioning the worst (or rather grossest). That, in turn, leaves the door open for me to start worrying about things I can't control. This list is IMMENSE. I'm not kidding. Global warming is on there. The polarized political climate-check. Not knowing the potential markers for disease in my genetic code-yup that's on there too. Now I would like to think I am not crazy (famous last words). I don't cycle on all these thoughts. But it's fascinating that I took a second away from the keyboard to essentially call up those insane worries. It took zero effort. They were just-there, ready for me pull them out of the haze of my brain and flesh them out with some more focused worry. How kind of me-right?? Do I worry about the huge things because I feel powerless with my everyday worries OR do micromanage my daily worries because I see the chaos of the big picture and it scares the crap out of me? World's worst 'which came first?' question, isn't it?

Those worries are like water. They take the shape of the container or rather they take the likeness of the container. Feeling tired, overworked, lethargic? MAGICALLY I begin to worry about my weight (fitting the container). When I become overwhelmed about my daughter's future I can't help but sometimes see floating islands of trash, dead polar bears, little ice chunk remnants of glaciers big enough to fit in your hands. Not kidding. Am I a little nuts? Maybe.

The really sad thing is happiness doesn't seem to work the same way. When I am filled with joy-I am just that filled. My happy moment doesn't seem to set off a chain reactions of other happy thoughts. Peter Pan would have a really hard time getting me to fly-or really any of us. How often are you having an amazing day and your mind begins to race with images of amazing things you have no control over? Are our happy moments so dense that our brain is in a sense preoccupied for a moment? A rest from the worry? Maybe that's it. Or maybe it comes back to that primitive fight or flight response when it comes to worry. The mind races when it is scared. Could it be that? Why does the anxious brain not have uncontrollable positive thoughts running rampant?

We need to work on that.

Friday, July 4, 2014

I Spent the Fourth with the First

I spent the Fourth with the First
The First Person I've met that was created to see
See the things we all miss each day
Day passes to night and she says "Bye bye"
She sees 'it' all as the same-"hello flower, hello mama"

I spent the Fourth with the First
The First Person I've met that was born knowing
Knowing "it" is all the same and each blade of grass is different
She knows and celebrates the miracle of this paradox every day

I spent the Fourth with the First
And she is my last thought before sleep.

Monday, June 30, 2014

The More She Says the More I Understand Why She Thinks Talking is Overrated

I have a "pinch me" feeling with Sofie's progress lately. We absolutely have our textbook ASD trials and obstacles. Some days are more trying than others. But she is really starting to connect with this peculiar and foreign idea of "talking to people." We have had so much help along this crazy journey from family, friends, our amazing therapy team, teachers-the list goes on and on. Our newest breakthrough seems to have come from our speech therapist. She suggested that instead of holding out for a word or phrase we should give her other chances to succeed when she feels tongue-tied. So we started requesting that Sofie at least make an "ahhh" noise accompanied by eye-contact. She has really responded so well to this. It really built up her confidence and reduced her frustrations. And that confidence has exploded with a tidal wave of talking (well a tidal wave for our quiet girl). The talking really began to snowball around our Poconos trip in June. She is labeling things she sees as soon as she sees them (instead of the delayed response she would usually give). She is becoming increasingly tickled by how quickly she can get something by "using her words." I have never seen someone so proud to say "mmmmmillllkkk!"

And with this joy comes some skepticism. Perhaps it has always been there but Sofie is getting more comfortable letting us know how silly she thinks some of our world's social constructs are. Sofie has (I think) mild Autism and often we find ourselves reacting to things as if they were ASD effects but its sometimes just being a three-year old. One of these things is her classic todller self-centered thinking. She goes about her day thinking everyone around her knows EVERYTHING about her. HERE is where the perfect storm between typical toddler behavior and autism behavior forms.

 Me: "Sofie what do you want to watch [on TV]?"

Sofie has opened her PEC Book to Dinosaur Train and stays silent

Me: "Mommy doesn't know what you want." I start naming shows playing dumb.

Sofie: (softly) "Chain" with no eye contact *chain is "train"

Me: "Can you ask mommy for dinosaur train? I love it when Sofie uses her words. Can you say 'please dinosaur train'?

Sofie: looking downward she scoffs "AH Course I YIKE Chain"

Me: "Can you ask mommy for Train? Say 'train please'?"

Sofie: still not looking "BUH course I YIKE Chain! Bud and Tine (Buddy and Tiny are characters on show)! AHH Course!"

This goes on like this for a bit. Sometimes a minute or two sometimes longer with some tantruming but I think the exchange says a lot.

Here is my theory:

I think most three-year olds don't think there is real dire need to communicate their desires to their parents. I think many still assume Mommy and Daddy 'just know' what they want. How many times have you dealt with a screaming toddler that is furious you don't know why they are upset?? BUT a typically developing kid enjoys asking for things. Often they are like a broken record with their questions. There is a pride I see on these kids' faces. They want that connection. They want to talk. In my days and nights with Sofie, I can say she doesn't naturally get that typical toddler high from talking. Sofie communicates through touch. She loves touching those she cares about. She will physically shake with happiness sometimes from these exchanges. She enjoys vocalizing and her discreet babbling talks to her favorite doll "mokey." I think the high from talking hasn't come naturally to Sofie because expressive language can be a real source of anxiety and stress for Sofie. I equate it to how I hear runners talk about the "runner's high" with long distance running outdoors. I have not had any small victories with outdoor running that would make running long distances an attractive prospect for me. It's great for them but it's not for me (i'll stick to the treadmill I visit every 6 months; another Me Activity I need to return to). But sweet Sofie doesn't have the option of saying "Sorry guys, talking is tough. I really don't get the point of it. I'm fine with that."

And that's the thing. SHE is fine with it. Her frustrations come when she is in a situation in our black and white world that requires her to talk. THANK GOD receptively she is so "here." But that comes with a unique challenge because it has given her the gift of being a thoughtful and quiet observer. She gets to experience the world and take in the lessons around her. BUT she has no natural need to ever share those lessons because she doesn't really 'get' the incentive to share it. She has created this self-sustaining happy universe for herself. Well, rather it's self-sustaining according to Sofie. A toddler lives in the "now." It is insane to expect a 3-yr old to think about "the future" and how their actions will affect it. And yet sometimes I think I do expect her to see the big picture. That looks insane as I type it. But if I am honest yes, I think I sometimes push this agenda of talking without explaining why. I am working on that though. I really try to remind myself that WE want her to talk and WE know why she needs to but Sofie is happy today. It's a hard sell.

So thank God, she is starting to see why talking to people can be a good thing. And I think she is getting that we aren't trying to take away her twirling way of life. I know I am projecting a bit there but whatever. All I know is that my heart swells every time she talks. And I REALLY hope that her heart is swelling with pride too.

Monday, June 23, 2014

Love the Adventure

 We celebrated our five-year wedding anniversary this month. We took our little adventurous 3-year old to the Pocono Mountains. We had the best time. It was truly one of the best vacations of my life. And yes, we were lucky enough to have amazing weather. And yes, we were lucky enough to have a wonderful place to stay. These things alone would have made it a wonderful and memorable trip. But we had the added bonus of having every experience heightened knowing that we were living out a dream. How often can you say that? The day Sofie was diagnosed with ASD I couldn't see trips like this-they were for other families. And no it wasn't the label that made me feel this way. I knew my little girl's struggles and it made the dream of a happy spontaneous vacation, just that- a dream. We have gone on vacations since the diagnosis and they have been amazing. But this trip to the Poconos came with some potential roadblocks that not so long ago seemed like giant brick walls. Some of those roadblocks were the long car ride, the fluidity of our plans each day, keeping her safe holding our hand (easy to forget she used to hate that), giving her freedom to run (didn't always 'get' "stop"), being out somewhere that is a completely new sensory palette to explore (again, easy to forget EVERYTHING used to go in her mouth).  I'm not saying any of the potentially dangerous lines that are thrown around the blogosphere regarding Autism that would suggest everything is easy or she is pretty much a typcially developing kid thanks to therapy and diet changes. She is not. A fact I am reminded of anytime I meet a "typically developing kid" her age. What I am saying is that she is a thriving child with Autism. The steps we have taken since beginning our ASD journey have been exhaustive and not all of them proved fruitful. Every kid is different. I think of the time I spent trying out OT brushing, or our time with fish oil and liquid B12-it doesn't always work but you try what is feasible and safe. Going back to our trip, it was truly a celebration of all those steps and the steps my husband and I have taken since the diagnosis. I thought I loved him before we got married but the depth of love you feel when you know that you have a teammate that is right there with you and has the same vision for your family-it brings that love to a whole other level. And I guess that is what this rambling blog is all about. This crazy journey we are on has made us feel everything on another level. Of course we get bogged down by the trivial from time to time but we smile every time Sofie runs to get something we asked her to. We tear up sometimes when she constructs a simple sentence. We fight back happy tears when she puts her arms around us for a picture (pictured below, a first!). And she has given us the gift of keeping the volume down, so to speak. When we were at Bushkill Waterfall we heard quite a few parents getting mad a their kids for messing up their shoes with their puddle jumping. We didn't see the big deal. So we told Sofie she could "gently" step in each puddle she saw. And she followed THOSE directions quite well. And this isn't a reflection on how amazing we are. This is a reflection on what our daughter has taught us. They are just shoes. Experiencing all "this" is more important than clean shoes. We were talking while we were walking in the woods by the Falls and my husband was telling a story and the phrase "why are we here?" was uttered. Sofie zeroed in on that question and babbled "wah we ear? be oppy!" Let me translate: "Why we here? Be happy." And THAT is what made this one of the best vacations of my life. We have an amazing teacher.
Kettle Creek Aviary Research Center

Summer is Here and the story continues to evolve and move forward

Has it really been over a month since my last post?!?

I have been short on words lately. SO much is going on and I am struggling to process it all. The emotional highs and lows have been almost comical in how erratic they are. If I wasn't already on Zoloft I would think I have a real problem!! Some days I feel like the worst mother (see countless posts lately as evidence) and on days like today I feel so amazingly lucky and happy to be alive. My issues with anxiety make my brain search for something to be anxious over. Money, my health, my family's health, career paths, the environment ( not kidding, pictures of plastic in the oceans gives me ACUTE anxiety)- no topic is safe from my anxious brain. I sometimes wonder what life would be like if Sofie was "typically developing". I know I would find things to worry about. And I imagine them being pretty trivial (well maybe not all of them). Although to be fair, if I was going down another path those worries wouldn't feel very trivial. I guess what I am saying is that I am working hard to just live my life and not play the game of "who has it harder and who has it easier." I was reading the blog of a mom with a sweet little girl with Progeria (the rare rapid aging disease). I felt small and this blog felt small and petty when reading the obstacles their family is facing. But I guess while perspective is incredibly important to have it is equally important to allow yourself to feel sad and overwhelmed without adding a layer of guilt because "it could be worse."  I know I have an embarrassment of riches in my life but I am allowed to get choked up when a "communication device" is mentioned as a possibility for Sofie "down the road." I am also allowed to bounce off the walls with happiness when we seem to be really taking some huge steps towards Sofie talking with more ease. I am going to blog much more often this summer. I am going to try to make short entries each day. I am going to try to do this because I realize that these gaps in entries allow for a lot of amazing things to go undocumented but it also allows my brain to get filled way past capacity. And I desperately need to do some much delayed spring cleaning for my brain. 
My happy place

Tuesday, May 13, 2014

Sunnier Posts Coming...

I have tried to exercise my negative thoughts out through some sort of catharsis. But I think my next entry will be a letter to myself written by me in six months. I'm going to try and make it a very positive letter. I'm really going to try. I really need to find out where Sofie is going to school next year. This is not doing my mental health any favors. Maybe faking it until I can make it will work. But right now- I am tired.

An Amazing Exercise in Self-Doubt and Negative Thoughts: A Shark's Layover in Dark City

Oh the life of a shark. Finished up a vacation and OF COURSE have some moments I wish I could do over again. I am pretty convinced I am not meant to sit still. Sitting time is thinking time. And thinking time allows the self-doubt in. I have been a bit more anxious about money than usual. I feel like I am just treading water all the time. And any financial assistance anyone tries to offer me I see it as a confirmation that I am, in fact, drowning. I can’t see the help. I just see myself in six months trying to explain how that help has disintegrated thanks to my amazing finance skills. I would never, in a million years, judge another human being as harshly as I judge myself. Perfectionism isn’t thinking you are “the shit.” It is thinking perfection is attainable and you are shit for not getting there. I am a rather sunny person for the most part. Reading this you would think I am a part-time Sylvia Plath Impersonator. I have so much to be grateful for and I see a lot of good in my life. And I see a good amount of positive things in me. But those dark thoughts are there-waiting and ready to strike when I am foolish enough to stop moving. They don’t show up in every calm moment but they have a gift for showing up when it is most embarrassing.  Family trips are awesome opportunities to act like a lunatic that can’t relax. I HIGHLY recommend it. It’s a quick and easy way to alienate the people closest to you. Its awesomeness streamlined. It’s an odd thought. You need “safe people” you can be vulnerable around and these are the people that will in turn feel the worst about revealing yourself to and, in turn, feel like your standing with them is anything but safe. My logical side of my brain knows its family and your spot is safe. But I cannot help but help but think my spot is bit beaten up by my neurotic flare-ups. Even with the people you love-don’t your hang ups becoming tiring? Do the hang-ups create fatigue that you can bounce back from? Or is it an exercise in atrophy? Or am I just a nut that needs to shut up when my folks offer to help?

Tuesday, April 22, 2014

Taking Some Power Back..

My therapist says that it helps to say the crazy stuff in your head out loud. Okay, to be fair to my therapist she did not QUITE phrase it like that. We were talking about insecurities I have and fears that roll around in my head. And she suggested that saying the thought out loud takes the power away from those words. And so with that, I am going to conduct quite an experiment. I'm going to make myself quite vulnerable and put all those scary words on the internet.

 Here I go... I think there is a certain way to teach Sofie and that I am not organized, structured, or whatever, to execute such a lesson plan. I think she is absolutely brilliant and I often attribute that to her father-not me. I often attach my feelings of awkwardness to my daughter. In other words, she gets THAT from me. I think that I missed something HUGE her first year and it was that 'thing' that affected her wiring, so to speak. I am ashamed when I feel guilty about her Autism and simultaneously feel the disorder makes her more astounding than anyone else I know.

 I know for a fact vaccinations do not cause Autism. But I do sometimes get fixated on wondering what in my environment "contaminated" me. So much is put on the mother's health before and during pregnancy. I keep waiting for some allergy or asthma medication to be linked to autism. Silly I know. But I do think it. I'm worried I took the less brave option putting Sofie in a "self-contained classroom" next year (taking her out of her beloved preschool). I know we looked at her progress and made an educated decision based on her strengths and weaknesses. But I can't help think, late at night, that I didn't believe in Sofie enough. I worry that putting her in that other classroom is surrender. I know 'on paper' we did the right thing for her. But did I just limit my child? Did I change our narrative of super powers to a story of disability?

I'm scared to have another kid. We aren't ready for another child right now. But I am scared of having one. What if that baby has Autism too? What if that baby's Autism isn't as mild as Sofie's? What if Sofie can't handle a sibling? What if I can't juggle Sofie's education and social challenges with another baby? What if we never have another baby? Could I live with that? I do like the idea of another baby but I am scared as hell.

 I feel like I am failing a bit these days. Sofie's birthday is coming up. I am torn between giving her the celebration that fits her personality and developmental challenges and what all the other moms do. And by "other moms" I just see the phrase as this scary entity like 'the boogie man.' This odd little concept I have cooked up in my head of an army of women that manage to get their daughters excited about birthdays, holidays, little friends, toddler gym classes, and crowns (anything on their head really).

We are getting Sofie a bird. She seems so excited about it. Do I dare let myself wonder how she will interact with the bird? Will it be another one of life's moments where I am reminded that my kid is "different"? I am embarrassed that I can have a completely healthy child and have this pity party. In my most stereotypical catholic-guilt moments I am just waiting for that ungratefulness to materialize into something horrible.

 I have been really stressed lately. My mind wanders to existential worries. Why is it that when I am worried or scared my brain thinks the best course of action is to think about much bigger problems I have ZERO possibility of controlling? Seems like the actions of a masochist! I am going to go to bed now. I am going to read what I wrote tomorrow. I am hoping it looks like the ramblings of an insane person and that I will see I am putting to much pressure on myself. I hope. We will see. Good Night.

Friday, April 18, 2014

Incoherent Gratitude and Other Emotions

Very sleepy. I will organize my thoughts into a long LONG blog later. But for now.... Having a roller coaster of emotions this week. I have been absolutely devastated that Sofie's eval team (the good one) thinks Sofie needs to be in a special needs only classroom to address her social issues. I have been thoughtful hours after learning this. Letting myself think that maybe they had a point. I have been tired. Still tired. I have been overwhelmed by my long list of projects. Still doing that too. I have been excited to FINALLY find a baby bird for Sofie! I have been amazingly proud of how well the White Plains Fundraiser went. 1,000 dollars! I have been anxious hoping I can do it again and get enough support for teacher appreciation night May 6th. I have been really scared about where Sofie will be placed. I am nervously excited about the road ahead for Sofie.

Monday, April 7, 2014

Awesome Cause Alert!! Your invitation to join me Sunday April 13th at Wine and Design Cary

If you live in the Raleigh/Durham area, and are free Sunday April 13th, come paint for a good cause. We will have refreshments, door prizes and an auction!

Where: Wine and Design Cary 
483 James Jackson Ave
Cary NC 27513

When: Arrive at 3:00; Painting 3:30-5:30

Call to Reserve Your Spot Today!
or go online

Monday, March 24, 2014

Evaluating the Evaluation

Long rambling blog post about the insufferable evaluation we put Sofie through will be posted in the coming days.

Tuesday, March 18, 2014

Sofie's Journey: Countdown to Lighting it Up Blue For Autism Awareness Month

Time for Mommy to Let It Go

Today I have been OUT for the count. Sinus infection, enough said. My sweet husband took over today. He did an awesome job. He is a wonderful Daddy. And I was amazed at HOW much of a creature of habit I am in my parenting style. Sofie is our first so it is impossible to tell if my style is because she is our first or because she has Autism (or a little of both). But regardless, I caught myself a few times about to say "Oh we usually do this.." or "She doesn't like it when I do...so I do..." Just realized this evening that full-time preschool will be a big adjustment for Mommy-and a necessary one. ASD or no ASD it's time to shake things up for my sweet little control freak (apple doesn't fall far from the neurotic tree).

Sunday, March 9, 2014

A Mommy's Manifesto: Breaking our kids out of the box we put them in

What a time we are having on this journey with Sofie. It is becoming oddly laughable how much we push our children to be "normal." As a simple fact, it is something I have always known but life with Sofie has given it shape and texture. I can really SEE the absurdity and I feel like a fool. Sofie is waking me up to my own absurd role in the predictable dance. Growing up I was an oddball kid with a secret wish "be pretty, accepted, have the body of what I saw in the magazines (so on and so on)." It's an embarrassing admission and yet I know it's an obvious one. I fell into the trap and I sadly I did what was expected of me. What pushed me? My parents celebrated my quirkiness and let "me be me." Where's the push? I think my brain betrayed me. Of course, there is the more abstract concept of "personality" to consider but I will push that to the side for now. Right now I am stuck on this idea of "improvisation versus imitation." Years ago I saw a nature documentary on the intelligence of apes. In the documentary a scientist did an incredibly simple experiment to illustrate Ape's neurological edge over humans and sadly its biggest hurdle. The scientist travelled to remote villages and presented children with a black box. She would demonstrate a series of steps the children would need to perform in order to open the box and receive the prize. The children watched intently and performed the tasks perfectly. She did the same experiment with apes. They too passed with flying colors. The next level of her experiment is brilliant in my opinion. She gave the children a clear box. The clear box revealed the inner workings of the puzzle they needed to solve for the treat. She began to demonstrate the series of steps and it was obvious that the first few steps were unnecessary to perform the task. But time and time again the children imitated the scientist's actions (always including the unnecessary steps). The scientist tried the same clear box experiment with her apes. And time and time again, they proved to be smarter than the children. They saw that those first few steps were unnecessary and it was only the last step that was necessary. So consequently they omitted the scientist's first few steps and happily retrieved their treat. The scientist concluded that while the ape clearly has an edge over the child its the ape's impulse to observe and improvise instead of meticulously imitating holds it back from learning more complex tasks. Now my child is not an ape and I am not suggesting any child on the Spectrum think I am comparing them to a monkey. But I am stuck on this pull between improvisation and imitation. What if our Spectrum Kids hold the possibility of having the best of both worlds? I understand Sofie needs to learn to imitate more consistently but I know she can imitate. As she would say it's "poppable (possible)," She does imitate when she feels like it. And she spends the rest of her energy running, exploring and questioning the semantics of my cliche' parenting lines. "Sofie, you can't do that",,,"Buh I did dat." We just had Sofie evaluated for school. The evaluation team are good people called to a vocation of helping atypical kids. But I must say I think the system, like so many things in life, is very flawed. My husband and I were honest with our responses and spoke freely of Sofie's challenges and we were proud to share our stories of her incomprehensible brilliance along with how far she has come in a year. I noticed the team did not write as quickly on their clipboard for stories of Sofie's brilliance. In the observation room I watched these strangers feverishly ask Sofie to perform tasks and quickly scribble down when she refused (which was often). It was later explained to me that while Sofie performs some tasks "at age level or MAYBE older" there are more basic tasks that she appears incapable of doing. A theory was told to me by one of the members of the team. She said she thinks Sofie's self-directed behaviour is a reaction to her frustration and confusion when asked to do something she doesn't know how to do. l'm not buying it. I know in my gut that Sofie gets distracted by the textures, colors, smells and almost infinite possibilities of an object. THAT is not a disability. I'm getting tired of hearing that word- disability. I think "disability" is a word to state obvious things. While of course in the academic sense of the word, we need it to protect people's rights and make sure they get every equal opportunity. But why are we stuck on the word? Why does our society obsess with this checklist? Why do we segregate? On some level we are all learning disabled if you think about it. I am an incredibly visual learner. I have trouble listening to people for long periods of time without getting distracted. I'm terrible at finishing books. I'm terrible with directions. I get stuck on landmarks. I'm terrible with numbers. While you read this, think of the long list of things you struggle to learn. Think of when you were a kid. What did you struggle with? I was never labeled with any disorder or learning disability. Perhaps we are all on a spectrum-not the Autism one but a spectrum nevertheless. And for some reason we have come up with this checklist to determine who is normal. I want to make clear that I am not making light of the very challenging learning disabilities and disorders millions cope with everyday. All I am asking is for us to break the cycle. Forgive the language but screw normal. I will get Sofie the "help" she needs. But I am not going to look at her like she is less-simply beause she is so much more than many of us can understand. I'll play the public school game. I will sign off on lengthy paperwork and get Sofie where she needs to be to thrive. End of story. Well, not that easy. It killed me seeing Sofie in that evaluation. When we got home I cried on the phone to our case worker. I felt Sofie was bullied. I felt like I didn't protect her and put her in a situation to be judged by strangers. Sofie saw me trying to contain my tears. She walked over to me and said "Mama, Mama" as she shook her head in what looked like disbelief. She climbed up on the couch and stroked my cheek and gave me a kiss. I think while Sofie's beautiful brain is giving her some hefty obstacles to face it has also given her some amazing gifts. Her brain and her spirit are going to take her out of the cycle (and hopefully our parenting will). She will learn to imitate but she is never going to apologize for being a true original. I am going to try hard to be a little more like her everyday. Let's help our kids learn but stop trying to make them fit our antiquated definition of "normal." Seriously, let's do this!

Monday, March 3, 2014

A Perfect Moment

Lots of clutter in my brain on any given day. It's nice to have these quiet moments that shake some sense into me. Sofie gave me a nice reality check. She was incredibly cranky when she woke up. :)

Thursday, February 20, 2014

Being a Princess is Complex Stuff

Been struggling this week with labels and decided to create a little chart. Feel free to share with the quirky princess in your life (or the family lucky enough to have her). Perhaps this exercise will help organize my thoughts into a blog entry by this weekend.

Monday, February 3, 2014

In Search of Grey Gardens

I haven't been blogging as much the past few months. I think its in part because I have been very busy with Sofie but also because I don't NEED to blog these days. I don't have the same level of fear I did a few months ago about the road ahead with Sofie. These days I think I am more in Protector Mode. I am becoming less and less worried about what people think of Sofie and more concerned about protecting how unique she is. I don't want her to apologize to anyone for who she is. We are embarking on a bureaucratic journey to get Sofie ready for Kindergarten. I am discovering a lot of traditional school is fitting a mold, an idea of how a child "should be." Today we went to our first county transition meeting with Sofie. The meeting went fine. The evaluators were very open to hearing about Sofie from us and observing her play. At one point, the teacher evaluating said with a happy reflective tone "She [Sofie] seems really content." And she is. So as a parent, you have this moment of "So what am I worried about?" We have a little girl that has Autism and by some miracle doesn't have many of the side effects that can haunt a person. I never want her Autism cured. I think we should start saying "find a cure for Autism's side effects." The beautiful perspective she has on the world is not an illness. She is not damaged. I am really beginning to feel I am working towards an Understanding that I wouldn't have without being Sofie's Mom. It would wound me to read articles suggesting things the Mother was exposed to that brought on her child's Autism. Forget vaccinations. I think that theory has ABSOLUTELY no merit. Won't waste the characters in this post. But I have often tried to think of what I did. And to be honest, I have yet to read an article that had me think "OHHH. That's it. I do remember when I had that flu, or took that medicine, etc." So I go back to why I haven't been blogging as much. I am done "mourning" ( I hate that phrase). Now I have a new drive to write not because I am sad but because I truly feel I have something to say-unapologetically. In crude, somewhat comedic, terms...screw anyone that is going to see Sofie's Autism as tragic. My advice to the world: the next time someone tells you his or her child has Autism, don't say "I'm sorry to hear that" or some diatribe about God giving you what you can handle. Simply ask "How is he or she doing?" That's it. Saying anything else is oversimplifying something incredibly complex into some sad greeting card. Don't mourn for these kids. They are still here. Ask if they are okay. Ask if they are happy. And if the parent seems to be struggling ask if they are okay. Alright enough ranting. The past few weeks I have been having flashes of this HBO Movie "Grey Gardens." It was a dramatization of a documentary about Jackie Kennedy's cousin, Edi, and her mother and their infamous hoarding. The movie delved into the relationship between the mother and daughter and what brought them to live in squalor and isolation. Now you may say, but Kristin, the title of this post is "in search of Grey Gardens." why search for something so sad? Well of course I don't fantasize about living in a legendary cat-filled hoard (besides I am allergic). But I find myself sympathizing with the Mother in the film. Her daughter Edi is eccentric and would rather twirl and dance than marry. The Mother is a bit of an oddball herself and revels in having a partner to twirl with and forget about the outside world. Edi matures and wants to twirl and dance outside the walls of their estate, Grey Gardens. The Mother doesn't want to lose her twirling partner and is scared that the big scary world won't understand her daughter and she will get hurt. Now with any great HBO production there is a lot of dysfunction, crying, drama, and unhealthy dynamics of relationships. The Mother makes a lot of mistakes and many of them are fueled by pride and privileged delusions. She is not a perfect model for parenting. But I am stuck on this image from the film: Edi and her mother dancing and laughing while performing at an impromptu lavish party. They live in their own little world. They are "performing" for the party but you know from the development of the characters that they don't need the party- they need to twirl. I can see the temptation to protect your Twirler from a world that wants her to be something "normal." I'm not going to hide Sofie away from the world. But I am going to work very hard through Sofie's schooling to protect her. Being a girl is hard enough. Add on top of that being the kind of unique most people can't wrap their heads around and you have a real challenge. But it is a challenge I will be sure we meet with dancing feet.

Sunday, February 2, 2014

More Frequent Posts Are Coming!

So much good is happening in our household. We are so proud of our happy twirler. Tomorrow is her first evaluation with Wake County. Kindergarten we are on our way :)