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“Well, at least you KNOW now….”

This seems to be the comment I have gotten most often since Marley’s official diagnosis was made at Kennedy Krieger.

“I know you’re glad to have an answer.” and things in that vein.

Heck, MY facebook status update after leaving KKI was : “There is so much more to our story/adventure, but the important thing is WE HAVE A DIAGNOSIS.”

I don’t expect anyone to know what to say– especially when they are commenting on my status and seeing how I phrased it… it makes sense I would read those responses.

When the doctor began our goodbyes from Krieger, she stated that I should, “take some time to process it and send (her) an email/be in touch” with any questions, etc.

Time to process it? Psh. I “knew” already. I “knew” when I made the appointment. I was relieved just to have someone tell me what I had thought all along…. to put it on paper so we could move forward.

Right?

I THOUGHT I knew but — and I know this is so cliche/Real World MTV— I had no clue.

…and in the tradition of the Real World opener that (some) of us know so well….

“This is the true story… of Marley, Mommy, and Killian… picked to roadtrip to Baltimore…work(ing) towards answers and blogging… to explain what happens… when the doctor looks at you… and says…Autism.”

If you’re new to Marley, stop… or didn’t know we were going to Baltimore, you can find that story here.

We left after picking Chloë up from school on Tuesday, 11/1/11. She was going to stay with my grandma for a bit until my mom got off of work, then they would go to dinner, mom would take her to school Wednesday and Ben would pick her up at the bus stop that evening.

I ended up leaving the area around 5:30pm, about the same time as Mandi and her dad. We hoped to meet up in Fredricksburg for dinner. The kids slept until we got off of the interstate to find the restaurant. Dinner at Sammy T’s was yummy and dessert was delish. I took Marley to the restroom after handing over my debit card to Mandi so that we could get back on the road. I came back to her telling me that she had them fix me a soda to go. At that moment, I thought that was amazingly sweet of her but that I didn’t really need it. I’ve seen her get ‘one for the road’ at various lunch or dinner dates we’ve done, but it’s not something I ever do. She and her dad walked the kids and I to the car and helped me navigate back to the interstate. They stopped to get gas a few blocks from the on ramp and I went ahead towards Baltimore.

As I’m driving, I keep hearing my phone say “GPS signal lost”… well, that sucks. We have a GPS, but I left it at home since I’ve used the one on my phone before (but only in Virginia) and it’s one less thing to keep up with. It wasn’t long before traffic was at a stand still. THIS was why she got me a soda to go– maybe this is why she usually gets herself one to go– she travels a lot and is probably highly aware that the one time you’ll want a soda and not have one is when you’re stuck in traffic. For so many reasons I’m glad we were Baltimore bound on the same night, but this was the tiniest sweetest thing that is so typical of her. She knew what I needed even before I did. A few minutes into the jam my phone buzzed with a text. “I see you.” It was Mandi– she and her dad were coming up on my left side as traffic was merging into one lane. I let them in front of me and was able to follow them right into the city while my GPS kept chirping about the lost signal every 10 minutes. Their hotel was less than a mile from the interstate and I followed them into the parking lot to say goodbye and thank you. I should have taken it as a sign that Ron offered me their GPS. My hotel was only 10 minutes away, I said, and I should be fine. Silly me.

Getting to the hotel wasn’t that bad– I did, however, decide that picking up breakfast from the 24 hour Dunkin’ Donuts a few minutes from the hotel before check in was NOT going to happen while I hoped that my hotel was, in fact, in the ‘upscale shopping center’ the reviews claimed it was since I was obviously in the ghetto currently.

I pulled into the entrance to the shopping center and was greeted by a small building with a gate. The security guard asked my name and directed me to the hotel. I wound through the parking lots and was able to park close to the main doors of the Radisson Hotel at Cross Keys.

I woke up Marley and Killian, grabbed our suitcase and headed to check in. Once in the lobby, Marley was fascinated by the lounge area and the fire place. She wandered around scoping things out while I got our room keys. I asked the gentleman at the desk if it was possible to get a room with no guests on either side as Marley has Autism and can sometimes get quite loud– as can Killian. He easily accommodated my request and we were given a room on the top floor. As he handed me the room keys, he reassured me “don’t worry about the noise. Have a nice night.” I don’t think he’ll ever truly know just how loaded my “Thank you” was that night.

[As I type this, I feel like I need to pause and mention that yet again I stammered ‘She has autism’ to explain Marley to a stranger. It seems to be the easiest thing for me to say to quickly explain her behavior, awkward comments, or sensitivities. Not only are ‘sensory processing disorder’ and ‘Aspergers’ nearly unknown in the community outside of families with loved ones who have either as a diagnosis, but even if the person I’m speaking to doesn’t know exactly what Autism is, they’ve likely at least heard of it. Each time I’ve said it, though, I get this nagging feeling like I’m lying– but I don’t know what else to say.]

Anyway, by the time we got into the room, it was after 11:30pm. The room was nice, with a cathedral ceiling and two Sleep Number beds stacked with down pillows.

Marley immediately claimed her bed and snuggled down into the comforter. Killian was checking out all the door handles and mirrors while I tried to find something kid friendly on tv at midnight. I found the room service menu and placed our breakfast order for 6:45am–this was a lifesaver since Marley wasn’t allowed to eat after 7am but we didn’t need to be at KKI until 8:30am. Since they had slept the entire drive up, I spent the next two hours trying to convince Marley and Killian to sleep before we all finally caught up with those elusive Zzzz’s.

Way too soon, there was a knock on our door and our breakfast had arrived. The huge tray was filled with danishes, pancakes, bacon, orange juice, fresh coffee, chocolate milk, and a large bowl of fresh fruit. (I will say– I was impressed– the total was under $30 and everything tasted great! If we end up needing an overnight again, I would definitely stay at the same hotel!).

After breakfast, Marley took a bath and then we all got dressed. She decided that the shower cap she used to keep water/soap out of her hair during the bath was the perfect accessory to her outfit and insisted on wearing it to KKI. I repacked our suitcase and we headed downstairs to check out. in the car, I set the GPS to get us to Kennedy Krieger and we were on our way. I seriously underestimated the traffic going into downtown at 8am. We sat in traffic as the minutes ticked by. The GPS signal kept dropping and my attempts to call Alli (the awesome research coordinator) were not going well– I kept getting sent to other voicemail boxes by the automated system. I finally looked up the intake email on my phone and scanned it for the cell number that I remembered it included.

“Elaine Tierney”, the voice answered.

“Hi, this is Carmen Briggs and I was trying to reach Alli Koch”, I said nervously– I had called the Doctor’s cell. I explained who I was and she immediately commented about reading Marley’s blog, asked me what I saw and on which side of me, then pulled up a map and talked me through the next 10(ish) blocks of driving. I apologized for being late and lost, and she reassured me that they expect this and build in a bit of a time cushion. Have I mentioned how amazing she and Alli have been thus far?

I made it to the building and pulled into the valet parking. I’ve never been so glad to see a valet in my whole life– and told the attendant as much… he probably thought I was crazy, but he was so helpful and sweet as I unloaded Marley, Killian, the double stroller, a big clunky toy for Killian and my diaper bag. I walked into the building, checked in, and headed to the 2nd floor.

After waiting a few moments, wandering around looking lost, and asking at a desk where it became obvious that I was not where I should be, my phone rang. It was Alli. I was in the wrong building. In my frenzy to find the valet and be finished driving, I had forgotten the part of the very detailed email (and instructions from Dr. Tierney just before I pulled in) that stated that their office was in the building across the street from the valet. At this point, I am half an hour late and feeling totally flustered– not at all like the capable road trippin’ momma I try to be (usually am?).  Alli met us at the valet area and walked with us back to her building.

Once upstairs, we reviewed the 11 page consent form (which went quickly since I had already read it at least 3 times since Alli emailed it to me).

We were then introduced to the doctor who would be doing the evaluation. (When I changed the date of the appointment so that it would match up with Mandi’s, it turned out that we would be seeing a different doctor for the eval, but that Dr. Tierney would be in towards the end of our day.)

After so little sleep, a rushed breakfast, driving in circles on the way in, and being told that she’d have to wait to get her blood drawn (yes– she was actually EXCITED about getting that done), Marley was in no mood for a meeting. She wanted to go to the play room I had told her about, but it wasn’t open yet. Even on a good day she isn’t a fan of hearing me talk about her, so listening as I answered questions about her behavior was the final straw. She went into “Grr mode” and clenched into herself on the stroller while growling whenever the doctor spoke or asked a question. After a few questions the doctor looked at me and said “I don’t see ASD (autism spectrum disorder).” and then asked if Marley wanted to go to the playroom (so that she could observe her). It took a few tries before Marley would answer politely and we walked down to the playroom.

Once there, Marley was a happy camper and did really well picking out toys and putting them back when she was finished. The doctor wanted to see if Marley would share with the assistant while I tried to distract Killian and not hover. I did notice that each time the assistant would ask if she could have a turn, Marley would decline and give a list of things she needed to do before she would be finished. This changed when Marley brought out a toy register. While pressing buttons the drawer came out and surprised her; she immediately handed money to the assistant. The doctor sat down with them and Marley handed her money as well. The assistant tried to ‘buy’ a scarf in the room from Marley, asking how much it cost, etc. Marley agreed to sell it but wouldn’t take any money– she instead handed the woman more money from the till.  The doctor then excused herself to take me back into the office for the rest of the meeting.

She stated that she didn’t know what to think, but that Marley can make eye contact and shares, so she doesn’t see ASD. (I had told her that Marley will give you something on HER terms, but doesn’t necessarily engage in reciprocal sharing. Once she gives it, it’s yours. To Marley, money is given. Never has she been given money and asked for it back. I felt like this was well illustrated in how she played with the toy register in the playroom.)

After telling me a few times that she “doesn’t see ASD”, she finally said that she thinks it is ODD. My heart sank. I wanted to run. I wanted to cry. ODD is Oppositional Defiant Disorder. In short, ODD is described as:

Signs and Symptoms

Some signs and symptoms that must be perpetuated for longer than 6 months and must be considered beyond normal child behavior to fit the diagnosis are:

  • Actively defies or refuses to comply with adults’ requests or rules
  • Deliberately doing things that will annoy other people
  • Angry and resentful of others
  • Argues with adults
  • Blames others for own mistakes
  • Has few or no friends or has lost friends
  • Is in constant trouble in school
  • Spiteful or seeks revenge
  • Touchy or easily annoyed

^That^ is NOT Marley. I read about ODD when we first began this search for answers about why Marley was constantly touching us/Chloë and why she was so sensitive. My child who, on a good/low trigger day, gets commended by strangers for saying “Please/Thank you/Sir/Ma’am” and relates to adults better than anyone is NOT that child. My child who, on a day where her schedule has been completely thrown out of whack, is growly and unsettled is NOT defiant or deliberately annoying. ODD didn’t fit Marley at all, but one of the sites did link to information about Sensory Processing Disorder– which I brought up to our pediatrician and she agreed that Marley has.

To have a physician essentially tell me that my child has a behavioral issue and dismiss the rest of my concerns was the ultimate blow. I didn’t say much to her– I didn’t know what to say.

By now, it was time for bloodwork. There was much paperwork left to do and Alli came to walk us down to the lab. She asked how I was holding up and I got teary– “She says it’s ODD, but I know it’s not. I just…”. She was sympathetic and calming. At some point in the walk (or while we were in the lab– so much of this day has run together), Alli informed me that Dr. Tierney wanted to meet us personally and do a full ADI evaluation herself.

…and that is a whole other post…. 🙂 (along with the adventure in the lab– that was hilarious!)

This is Halloween… This is Halloween…..

Halloween is probably our (Me, Chloë & Marley) favorite holiday!

This year, the girls and I (+Killian) planned to attend the Richmond Zombie Walk as we did last year.

Mo loves braaaaaaains.

The girls had decided to be ‘Zombie Girl Scouts’ and we even went to our local scout store to get them the uniforms (Chloë was a scout until recently and had some gift certificates to the store to use up).  I bought Halloween patches and blank patches (to make our own).

(L-R clockwise: Brain Eating, Lurking, Umbrella Corporation, Limb Reattachment)

I hadn’t decided on the basis for my costume yet, but had decided that Killian would be ‘baby food’ (by riding in a cooler or collapsible shopping cart with a sign and discarded baby dolls). He was such a hit last year just sitting in the stroller eating fake blood off of his hands, lol!

"Nom." (Photo Courtesy of Robbie at Greyhaven Studios)

Unfortunately, we didn’t get past the costume construction this year– the forecast took a sudden turn towards cold, rainy weather and we opted to skip the walk. The kids weren’t too bummed since they were able to walk outside and know that they did NOT want to spend a few hours outside in 44* rainy nastiness.

We did, however, wake up Saturday morning and enjoy Znombie pancakes which are cousins to the 6 Znombie Bites  (a RockStar Confections creation) I shipped to Kelli in June!

Znombie Pancakes

After breakfast the kids played and I took care of a few things before heading out to our local Chinese & Sushi buffet. We stuffed ourselves silly and then went next door to dollar tree. I let the girls pick out candy buckets and then we headed across the street where there is a church pumpkin patch. They didn’t have many pumpkins left, but we’re kind of  ‘Charlie Brown Christmas’ like that!

Pickin' out Punkins!

I had fun driving Chloë nuts by trying to pick the ‘perfect’ pumpkin and having her check its price. (This is done by taking the pumpkin up to the tent and placing it in wooden cutouts. The bottom of the pumpkin must touch the table under the cut out– about 2 inches down– and you try to fit it in the smallest circle that allows that. Beside each cut out is a price– which ever one fits your pumpkin is what you pay.) She was laughing as I talked about needing a body/head/boob(s)/and a baby head to make a “Boo’ing” pumpkin. (Marley & Killian both called breastmilk/nursing “boo”.) She was horrified and supportive all at the same time! $22 and 5 pumpkins later we all left cold but happy.

Carving the pumpkins was fun– Marley LOVES the ‘guts’ and once we scooped out all the pumpkins, she wanted to take the pot I used for the ‘guts’  into the bathtub with her and play in them, lol! (I had to say no to that, though.. since Daddy would be the one clearing any clogs!) After I finished carving Marley’s pumpkin and Chloë had finished her own, she took Mo upstairs to get a bath while I worked on my pumpkin. After everything was carved, lit, and photographed, I dumped the ‘gut pot’ onto the plastic we had laid down under our sheet. I then gathered up all the sides, twisted it, and let Marley put her feet/hands/face onto the plastic and felt the guts squishing inside!

Ewww..... guts.

This is a HORRIFIC pic of me, but we were totally clowning it up and having a blast! And... pics of me + the kids are rare-- especially me & Marley lately.

Gutting my pumpkin!

Have I mentioned that there were guts? 😉

The aftermath of PumpkinParty 2011.

This evening it was cold and rainy, so not really trick or treat weather, but I hadn’t endured numerous costume idea changes + meldowns+ planning ways to avoid more meltdowns for nothing. Since we (well, Chloë & Mo) ditched the zombie scout idea until next year, Killian’s ‘zombie hunter’ costume wasn’t going to work. I quickly grabbed a pinstripe shirt with ‘Rockstar’ emblazoned on the front and Ben grabbed one of our PaperJams guitars for him to tote— instant Lead Guitarist! The girls’ makeup took probably an hour. I bought some cream makeup so that  I could make Marley’s face black like the Francois Langur/Black Leaf Monkey (which she decided to be today)— she came up to me and asked if I remembered the black monkey in the zoo that had a mohawk. I didn’t remember any such thing, but googled ‘Mohawk Monkey and found the link above. She told me that it was the correct animal and that she wanted a mohawk. Chloë was beyond thrilled when I allowed her to use an old costume I had from a few years ago to be a vampress. Despite the weather and the fact that we only drenched ourselves for 3 houses worth of candy, I’d say it was a pretty great Halloween. Marley tolerated her mask and make up so well and for the first year ever, she actually said “trick or treat”!

Marley the black leaf monkey

Killian rocks!

So pretty it's scary.

 

“I mean, I probably wouldn’t kidnap a screaming kid….”

Oh goodness…. today…. well, yesterday…. (Friday)….

Today was my day to pick Chloë up at the bus stop to begin her week with us and since she goes to school near Kohl’s, I figured it would be a great day to grab some clothes for Mo. (Ben handed me $20 in Kohls’ Cash the other night when he surprised me with a breadmaker.)

I had to run by Mo’s counselor to grab her office notes for our visit to Kennedy Krieger on Wednesday, so I stopped by on my way to pick up Chloë. After we got Chloë off the bus at 3:15, we drove by our awesome pediatrician’s office where I ran in to pick up their records on Marley. After a quick stop by Wendy’s to cash in a coupon I had for a free burger (read: cheap 3:30pm lunch for Mommy), we ran by Sally’s beauty to grab my hair dye and I let the girls each get a clip in extension (Chloë picked red, Mo picked blue.) and then we headed to Kohl’s.

I had explained to Marley that we need to get her some clothes that fit and are comfy, especially with our trip coming up.

Once inside, we grabbed some socks & underthings for Chloë, a shirt on an end rack for me (that I have yet to even try on, lol!) and went back towards the girl’s section.

Let’s just say, I love Kohl’s, but finding clothing for a little girl without some obnoxious amount of glitter/bejeweling/beads/etc. is nearly impossible.

I managed to find 3 shirts that fit the criteria on outward appearances and we all headed to the fitting room. Chloë and Mo went in and I told Marley that I would need to see the shirts if they fit. It wasn’t long before she began throwing them out under the door announcing that “They did not fit!”.

Hm. I scanned the racks a bit more and found some shirts in a girl’s size 7/8 with super smooth snaps that (since the shirt was NOT Mo’s size) went from the neck to her navel. “THAT should fix the issue of ‘tight’ head holes!”, I thought and took it in for her to try on.

She agreed, took the shirt, and closed the fitting room door.

And then it started………

I think I unsnapped it before giving it to her.. I think I showed her the snaps….. I’m fairly positive I did.

But somehow….. all Hell was about to break loose.

She rejected the shirt, squealing about it being too tight. I didn’t see how that was possible, so I asked to see the shirt on her. Too late, it was off.

I should have let it go. Why didn’t I let it go??

No. I just HAD to see it on her.

Have you ever tried to wrestle a greased piglet? Into clothing?

I imagine it would have looked/felt/sounded not unlike what was about to take place.

I’m begging Marley to put on the shirt so I can see where/how it’s too tight. (Especially since sometimes she gets words mixed up like big-small/tight-loose/hot-cold/etc; she knows what they mean, but sometimes the abstract use –ie: not in direct comparison to something– mixes her up.)

My begging ended up pleading and forcing….. THIS was *the* shirt. They had them in 4 colors and they were cute and 60% off!!!!!

Lets just say that Marley got loud quick…. looking back I feel horrible.. I was determined to get her SOMETHING…ANYTHING to wear. (And, to my defense, that shirt was SOOOOOOOOOOOOOO cute when I finally got it on her!)

Anyway— I’m wrestling my angry piglet and she is screaming bloody murder when a Kohl’s employee comes into the dressing room.

Yep. That was a first.

I stammered an apology of, “I’m sorry—she…she has autism…..”

The saleswoman replied “Oh, it’s ok– we just have to check”

/sigh/ Game over.

We got no shirts for Marley.

I paid for the rest of what we managed to grab (woot for saving $64 and only spending $8 on my debit card!) and practically raced to the car with the kids in tow.

I called Ben & let him know it was going to be a “$5 hot & ready (pizza)” kind of night.

On the way home, still frazzled from the incident in Kohl’s, I remarked to Chloë, “Seriously? Like I’d steal a kid that was FREAKING out!?”.

I must say, though, that my statement to the saleswoman came as a bit of a shock to me. Marley’s not ‘autistic’ per say.. I mean, not only will we not have a formal diagnosis until Wednesday (can.not.wait!), but even ‘on the spectrum’ I don’t feel/think she has ‘classic’ autism. Why then autism? Because it’s ‘easy’. No, everyone doesn’t know exactly what characteristics make up a diagnosis on the spectrum, but it’s ‘easier’ to blurt out since most people at least know it exists. If I said “Oh, I’m sorry, she has Aspergers”, they’d probably give me directions to the nearest health department and wonder how a child contracted such a horrible thing. Of course, therein lies the problem— how do I expect people to understand if I am not able to explain/educate them as her mom? This is yet another reason that I am so excited for Wednesday— after that, I feel like I will finally be able to say with confidence “Marley has ________. That means ______. Ways to help are ________. Doing _______ triggers her really easily.” etc. I really didn’t realize how much having a ‘word for it’ means to me… her… us…. until now.

*Oh, and funny story– one day in the car, Chloë asked me if something was ‘because of Marley’s Aspergers’. Mo piped up, “HEY! I don’t have assburgers!!” All I managed in response was “how do you know?” and she quipped, “because I didn’t eat any!!!!!”. We really couldn’t argue with that logic and thankfully pulled into the driveway a moment later.*

 

Shopping…

sucks.

Unless it’s for fun stuff in the dollar section.

Shopping for clothes, though… it sucks.

Two weeks ago I had the ‘pleasure’ of taking Chloë shopping for new ‘everything’. A growth spurt and a few weeks away from home suddenly meant that nothing she owned fit her properly. Her feet went from a kid’s size to a woman’s size seemingly overnight. I had purchased some women’s size 5-6 flip flops for her midsummer and now she needs an 8-9. In women’s. MY SIZE. She’s only 9!  She also needed new shirts, socks, and jeans. Jeans from the junior’s section. She’s a 24, by the way… I don’t know I ever wore a teeny tiny 24. I’m sure that’s probably a 0/2 or something… but of course her awesome mommy was able to find a pair of Seven brand jeans (read: $$$) for $12 at a local Plato’s Closet that are a size 24. (She loves them and barely takes them off long enough for me to wash them!)

This weekend, I ventured out once again with all 3 kiddos.  We headed to Once Upon a Child (a local kiddie thrift chain) I was pleasantly surprised to see a sign announcing ‘15% off ALL clothes’. I let Chloë look at the few items they had in her size, and she got another pair of jeans, an adorable jean vest, and a shirt from the boy’s section for a program she had at school today. (She needed something with a ‘sport’ on it– so she snagged an olive green skateboard themed shirt, threw her vest over it, and she looks awesome!) I was also able to pick up a few things for Killian since he needed winter clothes, too.

Mainly, though, we were there for Marley.

Over the past few weeks, she has gotten increasingly frustrated with her wardrobe. Earlier this year I had to re-buy her wardrobe as she deemed anything with any print/decoration/glitter as ‘itchy’ and was unable to tolerate wearing it. I bought shoes that were compatible with not wearing socks– although I found out that she does really well with Skidders since that’s all Killian can wear due to his pudgy feet. Unfortunately, I didn’t know if she would be able to tolerate them so I only snagged one  pair for her when they were 40% off and sales+finances haven’t quite matched up for another pair just yet.

Recently she has been wearing nothing more than panties (boyshorts only!) unless we are leaving the house. Now everything is ‘tight’. Pants are tight. Shirts are tight.

Seems like an easy fix– you just go up a size or two…..

Unless you’re shopping for Marley. Trying to pick clothes for her goes somewhat like this:

-Check for print of any kind. No screen print. Not a logo & not even a character.
-Check for embroidery. No embroidery. Not even if it’s soft. Not even if it’s holding on something ‘cute’ like a flower.
-Check for glitter. No glitter EVER. No exceptions. Not even if it’s really cute.
-Check for decorations. No sequins or glitter. If it’s REALLY cute, see above.
-Check arms on shirts– do they taper at the wrists? No tapering.
-Check legs on pants– do they taper at the ankles? See above.
-No. Put back that shirt. It has glitter. No amount of telling her how cute it is will change that.
-Check for tags– no tags/printed tags are the best.invention.ever. Any other tags must be easily removable.
-Check for ‘studs’– these odd little bump-like decorations. She tolerates those. How, I don’t know. But she does. They are ‘bumpy’ to her.
-Glitter on the studded design? Put it back. Just do it.
-Find a shirt that seems to pass the test.
-Suggest to Marley that she might like it and ask what she thinks.
-Brace for the worst.
-50/50 shot that she’ll like it.
-Pick myself off the ground and put the shirt in the cart.
-Rinse.Repeat.
-Head to check out. Fork over cash.
-Realize I’ve been there long enough that we need to eat.
-Grab a Marley approved snack and then head home.
-Attempt to get Marley to try on the clothes.
-Two shirts in and she is finished.
-Cut off tags & wash clothes. The return policy is crud anyway.
-Proudly hang up ‘new’ clothes in Mo’s closet and breathe a sigh of relief that it should be a good while before you have to do this again.

Spend the next week in utter disbelief as Marley parades around in only underwear while screeching about how “EVERYTHING IS TIIIIIIIIIGHT!!!!!!” (Except for one pink leopard skort, a pair of mint green velour track pants, and a shirt that matches neither.)

Roadtrip!

I’ve been working on finishing an entry about a recent shopping trip with Marley, but for some reason it hasn’t been easy to write.  So, it sits in ‘Drafts’ waiting for its ending as I feel guilty for not posting more frequently.

This entry, though, is so much better than the one to come! I think this is the first entry that I won’t have to list ‘Marleyisms’ or write about challenges. That might mean it’s a shorter entry, but it sure is sweet…..

A month or so ago I called Kluge Children’s Rehabilitation Center in hopes of getting Marley in for an evaluation. Ben and I agreed that getting a medical diagnosis would be more beneficial at this time than going through the local school system since they would mainly be interested in the education side of things. Unfortunately, the waiting list is so long at Kluge that you don’t get an appointment when you call right now. From others’ experiences, it seemed the norm to be given a date for 6 months or so away, and then to be called with a cancellation. When I called, however, I was told that they can’t make any appointments at all right now, but that we will be put on a list. I gave them our name and number and thanked the woman for her time.

Since then I’ve had this feeling of dormancy. Like, what do I do now? I got her on the list– but here we are still struggling on a daily basis and attempting to get people to understand, well, her. Honestly, we are still struggling to understand her.

After a rough weekend, I decided that this week I would do more. I spent the weekend pouring over lists of places to take her to get a diagnosis– it was so daunting. I honestly didn’t know where to begin– do I call the hospitals & colleges 2-3 hours away or do I call the private clinicians that are closer? Will they know how to work around our insurance to get (even part) of this covered? How are we going to come up with the $4,000+ for these tests? What if I’m wrong?

I posted a facebook status mentioning that the following day was going to mean lots of stressful phone calls in the hopes of finding someone to see Marley. My amazing best friend, Mandi  Amanda, mentioned that I should try Kennedy Krieger Institute  on the Johns Hopkins Medical Center Campus. She and her dad have OI and visit there often. She encouraged me to get in touch with KKI and even offered (promised? insisted?) that she would go with me if we got in.  After all, she knows this place like the back of her hand.

As I read about KKI and filled out the ‘Request an appointment’ form on their website, I noticed a link for ‘research’. Upon clicking it, I was taken to a list of studies currently going on and in need of participants. I was excited to see that there were 2 that Marley may qualify for. I mustered up the courage to call the numbers listed below each and left messages with Marley’s name, age, and my contact info. I figured I’d give it a few days and then maybe try emailing the addresses that were also listed on the info sheets.

Imagine my surprise when I woke up this morning and found a missed call on my phone from a number with the Baltimore area code! I checked my messages and heard a friendly voice belonging to Alli Koch stating that she was interested in talking to me and I quickly wrote down the digits to the direct line for her. I made the kids breakfast  and entertained them for a bit before letting Marley turn on Netflix. They became engrossed in watching Rugrats and I jumped at the chance to call Alli back.

Let me just say– she was amazing! She was so friendly and patient! She went over our demographic info and allowed me to tell her a bit (a lot?) about Marley. She listened as I rambled about zombie gardens, vegetarian vampires, and Mo’s ‘other mom who lives in China’. She then moved on to a 40 question ‘mommy quiz’ about Marley. Some questions were things I’ve answered to myself many times while reading online, but some really made me take pause. Some were downright hard to answer with a solid ‘yes’ or ‘no’.  She was understanding when I didn’t feel like I could answer quickly and allowed me to think aloud to her until I finally hesitantly answered ‘yes(?)’ or ‘no…….’ to each question. She really seemed to ‘get’ Marley’s spirit and the fact that the kid is a riot and completely awesome!

After the ‘mommy quiz’ she explained that the info would be passed on to Dr. Elaine Tierney so she would have it when we came for Marley’s evaluation.
An evaluation which would be provided for free.
An evaluation which will result in a diagnosis.
An evaluation which is scheduled for 11/2/11. (Yes, I nearly fell over. I thanked her 50 times and then cried when I hung up.)
Oh– and, funny story, it just so happens that my amazing best friend will already be at KKI on 11/2/11 with her dad.

Someone was smiling down on us today.

They even sent a rainbow…….

 Yes, Marley played outside today in her swim suit.
This was the compromise between “Mommy, I want to swim” and “You can swim in the tub.”

The Others

Sounds like the title for a low budget horror flick, huh? (Actually– it probably already titles quite a few, but I’m too chicken to look!)

My last post was brought forth due to the interactions I have with ‘outsiders’… people in the store, friends, and family that doesn’t live in our house. I get so frustrated with ‘willful ignorance’ and it is so difficult to know how to approach someone who is ignorant to our situation due to lack of knowledge or a desire to avoid knowledge.

However; there is another source of frustration and sadness– ‘The Others’. ‘The Others’ to me includes Chloë, Killian, and Ben. Killian of course isn’t old enough to really have much of an understanding, and my main issue with him in regards to Marley is that I notice him imitating her occasionally– he is definitely a screamer at times and it’s really hard to know how to approach it when he is growing up and seeing her behavior. Chloë has struggled recently, but once I was able to sit her down and talk to her/read to her/watch videos with her about Autism/Asperger’s and what it is like to be a sibling of a child on the spectrum, she did a 180 in the way she interacts with Marley. It was like it suddenly clicked!

Tonight, though… my frustration is with Ben. I keep things very private even on my personal facebook about our relationship, being careful not to use my wall as a place to vent. The feelings I’m having right now, though, seem to come back to having a kid on the spectrum. I feel like it belongs here– I do not want to start some ‘poor me’ thing here, and I really hope I can navigate this gracefully while remaining true to the weight of how I’m feeling and the reality of the situation.

I am a stay at home mom, as most of you know. I left my job as a medical assistant in an 11 doctor practice shortly after Marley was born. I know that by nature, being a SAHM can create a sense of ‘distance’ from ‘the adult world’ and your partner. It’s natural to have frustrations when a parent/partner working outside the home doesn’t seem to care/know/understand/question how you fit 332 hours worth of work into a 24 hour day. The flip side of that is when the parent/partner working outside the home feels frustrated that you don’t seem to care/know/understand/question how they accomplish their job either. Somewhere along the line, in order for a marriage to be successful, you find understanding. You agree to disagree. Whatever– you figure it out.

Being a stay at home mom to a kid on the spectrum seems to add another level to the ‘you have NO clue’ feeling.

‘The Others’ are different in that they WANT to understand. They TRY to. Maybe they really do ‘get’ it, but even I have moments where I am at a loss as to how to handle all of Marley’s quirks.

I do my best not to bombard Ben with the daily goings on. If I have had a rough day, I’ll mention that, but I do my best not to get into a ‘who has the most stressful job’ contest with him.

Sometimes, though… like today… I’d really like to say, “THIS is how my day goes— this is how nearly every day goes!!”

  • Broken sleep not especially due to nursing Killian/cosleeping, but due to hearing you snore and not being able to fall back asleep. (Though this has gotten much better since we purchased a memory foam mattress!)
  • Wake up when your alarm goes off at 5:30am or just after and hear you in the bathroom/shower. Fall back asleep and wake up as you leave/say goodbye. Fall back asleep &/or nurse Killian.
  • Wake up to Marley in bed with me no more than 20 minutes after you leave.
  • Wake up to Killian who has noticed Marley in bed and wants to play– it’s not even 7am! Also, Marley MUST wake up on her own.
    Waking her before her body does is not good for anyone involved– and the effects will likely last all day.
  • Eventually Marley will wake up and we head downstairs for breakfast.
  • Every weekday for the past…. 3?? months I’ve made chocolate chip pancakes. Typically with fresh whipped cream. It took Marley 2 months to figure out she only likes whipped cream– no butter or syrup; however, I must ask her each morning to be sure it hasn’t changed. I must also ask if she wants the whipped cream on TOP of the cut up pancakes or on the side.
  • If we’re out of any of the ingredients, it’s a catch 22– if I tell her, she may become completely overwhelmed and state something like “I can’t eat anything” or “I don’t know what else I can eat”, but if I suggest we go to the store later, that brings on the ‘it’s too cold’ problem.
  • Dish total by the end of breakfast: 13
  • After breakfast, I wipe down the whipped cream monster, I mean Killian, and typically Marley wants to turn on Netflix. She loves Rocko’s Modern Life, Rugrats, Mary & Max, and a few other things.
  • Netflix isn’t working. Suggesting a movie we own is like Meltdown roulette.
  • Suggest she get dressed if she’s running around in panties. Often she’s in the same outfit (with new panties) that she’s been wearing for most of the week.
  • About 20 minutes after breakfast she’s hungry. This continues at least twice hourly until lunch. I’ve finally figured out she’s seeking sensory input– breakfast is usually sweet and soft (though I have been tossing room temp chocolate chips on top of the cream to add another texture). So it begins– the game of ‘what do you want’? At times she seems so hopeless, as if she’s searching for food on a desert island. Do you want an apple? Crackers? A banana? Marshmallows? Juice? Water? Yogurt? Shredded cheese? A jelly sandwich? A peanut butter sandwich? Noodles? Pasta? Apples with peanut butter? Cereal?
  • She sits down with her snack and I offer Killian his own serving. (It cannot come from HER portion, though.)
  • Killian touches her food. Game over. (This is another new peeve of hers. Another person’s food/body/fluid/breath touching her food immediately renders that food inedible. Her food put onto the plate I used to cut Killian’s (same) food before putting it on his booster tray– inedible. They are both eating yogurt– Killian drools yogurt colored drool– her yogurt is inedible. She’s eating noodles, drops one on the table– if it A)gets squished under the bowl and she sees it or B) I scoop it (unsquished)back into her bowl– the entire bowl is now inedible.)
  • Suggest Marley get dressed if in panties or to change panties if she’s in days old clothes. Suggest she brush teeth/pee/etc.
  • Meltdown roulette.
  • At some point we’ll head up to the playroom and tinker around in there– she prefers to venture up with Killian and they leave me behind often.
  • Lunch is a delicate game of 20 questions. When we figure out what she wants (typically the same thing for weeks at a time, but there’s always the day you have to figure out what that is, or the day that you have to name that and everything else before she suggests the same meal from the previous days on her own. For a while it was oodles of noodles. I was under strict instructions to ‘make them like Grandma– and don’t forget the LOVE!!’. I got away with rinsing them to cool instead of using ice cubes, but last week I tried to switch to the lower sodium kind– now she won’t eat them at all. After that, she wanted pasta and I had to offer every shape in the pantry, allowing her to sample dry noodles to help her pick. One night I thought I would be smart and cook an extra serving or two for the next day. I didn’t want them to stick together, so as I was cleaning up after dinner I put the tiniest swirl of extra virgin olive oil in, stirred, and stuck them in the fridge. I immediately worried that Marley wouldn’t eat them, but knew I’d be rinsing them to heat them anyway, so it should be ok. I rinsed them a few times in hot water until just barely warm and spooned out some for Killian. I then rinsed them a few more times until they were hot/cool enough for Mo. We’re talking a lot of water going through these things. Killian was munching away happily and suddenly after a bite or two Marley exclaimed that these taste “DIFFERENT!!! They are nasty. Something is on them and I cannot eat them.”. There was no going back and it was downhill from there as one was ‘broken’… oh goodness.
  • Suggest other foods while my food (if I’ve gotten that far) gets cold. Meltdown roulette.
  • Dishes after lunch: 13+10
  • At some point in the afternoon, we’ll attempt to fit in a homeschool activity, either formally or with something hands on/life skill based like counting how many rolls we need for dinner. She and Killian will play and bicker.
  • If the weather doesn’t suck we might end up outside in the blasted Barbie Jeep. At some point she’ll get hot which will make her itchy.
  • It’s not long before we’re back in ‘What does Marley want for snack?’ land. Today it was carrots. I peeled a carrot for her and another for Killian. A quarter of the way through her carrot, she came into the kitchen so frustrated she literally couldn’t form words. I was trying to help her by suggesting words so I could figure out what happened (note: HORRIBLE idea.) and finally she spurted out ‘Killian’s carrot TOUCHED mine and now I cannot eat it. I am throwing it in the trash.”
  • Heaven forbid we have to go somewhere– her clothes have now all been deemed ‘too tight’ (after getting rid of the ‘itchy’ ones) and getting her to wear climate appropriate (since ‘socially appropriate is long gone) clothing is a battle. I let her dress in whatever she manages to find comfortable and keep a blanket in the car.
  • Oh, this is of course after her insisting that she doesn’t want to go anywhere. 800 times. Loudly.
  • Since I’ve decided that ‘A trip to the Arctic (a.k.a. The Grocery Store)’ should be its own post, I’ll leave out today’s adventure there. (Let’s just say that couponing + a toddler + meltdown roulette= OH.EM.GEE. GetMeOut!!)
  • Over the course of a day, I will be asked no less than 20 times: “Can we go see Cam (my brother)/Heather (his girlfriend)/YaYa (my mom)!?” (they live 2 houses down and aren’t home during the day often); “Can I go back to my old school (preschool)?”; “When is Chloë coming back?” (I don’t know/not soon enough for you.); “Can I have a sleep over with _insert perceived friend’s name here_?” (we’ll see… aka– no.); “Do you remember when _insert things she remembers better than I do_?”; “When can we _insert road trip/fun thing/vacation_ again?”. But that’s not even the fun conversations– the fun ones are about her seeing ghosts or recalling an event she really shouldn’t remember.
  • At some point Killian will nap. Hopefully.
  • Marley won’t. Not unless I trick her into ‘resting’ or send her to my room due to behavior (and because she’s acting out as a result of needing sleep, she’ll sometimes pass out). Most often, she sees Killian’s nap time as an opportunity to snuggle since I have open arms after I get him to sleep.
  • There’s still 13+10 dishes in the sink and you’re going to be home soon. If we haven’t left the house today, I’m still in my PJ’s. I probably have to pee. The living room looks like the apocalypse hit. Our bed’s not made because Killian just got up from a late nap– which means bedtime will be a 3 ring circus. Did I brush my teeth today?
  • Marley is hungry NOW. She won’t/can’t eat our dinner anyway, so I go back through the lunch routine of ‘what will you eat?’.
  • “No, you ate the last _food of choice_ yesterday and you didn’t want to go to the grocery store today to get more, remember?”
  • Meltdown.
  • “Oh hi, daddy. Welcome home.”

And really, I’ve left out all the ‘typical’ stuff, like diaper changes, a potty learning toddler peeing in the floor, normal sibling issues, etc. Also, it’s hard to recall every single thing in a day that ‘triggers’ Mo, so I’m sure a lot of that got left out as well.

I’ve come back to this post so many times thinking I should keep it private or delete it… Maybe it’s too hard to read… it all kind of runs together…

That’s the point though, I guess.

Asperger’s, Austism, Rotary Phones, and VCRs

What do those 4 things have in common?

Depending on what generation you grew up in, you might not believe in the first two— or the last two!

Does that mean that they are any less real?

Of course not.

As a 28 year old woman, I don’t remember not having color television, making local phone calls using an operator’s assistance, or not having a family car.

As a 9 year old girl, Chloë doesn’t remember the days before cell phones, internet, or cable tv.

As adults, Marley & Killian won’t remember VCRs, CDs, having to watch tv shows at the time/day they actually aired, or ‘back when your phone wasn’t also a computer’.

These things are a blessing and a curse. The technology we have now is AMAZING! There are things I never thought I’d see, though I still wish that were at the point of every family living like the Jetsons! (Instant meals, automated showers, flying cars….)

(image courtesy of Wikipedia)

However, it does mean that there is a sense of entitlement and Heaven forbid there is a power outage! I kind of wish Chloë knew what it was like to wait for a song on the radio so she could record it on a mixed tape. I worry that Marley and Killian won’t remember reading actual paper books.

Of course, none of this means that these things are any less real. The world is constantly changing and we’re finding so much new information by the second!

I don’t remember the plague, Polio, measles, or other medically specific conditions that existed in previous generations, but I don’t discount their impact. I don’t scoff about how “We don’t have that NOW… maybe those people were just mentally ill and suicidal and convinced themselves/doctors that something was wrong. They probably shouldn’t have tried to treat it, since it was all just an excuse to take a break from field work/school/etc.”

Lack of understanding/knowledge/experience/observation of such things doesn’t negate their validity.

No one argues that AIDS doesn’t exist just because it didn’t originate until the late 19th/early 20th century.

Millions of people are on meds for depression/anxiety (myself included now, actually– but that’s a whole OTHER post, lol!), but I’m sure that in 1764 no one could imagine such a name for things (that while they likely existed then were swept aside), much less the ability to overcome them with medication.

Why is it then that these children– MY CHILD– is seen as ‘poorly parented’? ‘Undisciplined’? ‘Hyper’? ‘Overly dramatic’? ‘Poorly behaved’? ‘Disrespectful’? ‘Willful’? ‘Stubborn’? ‘Rude’? ‘Impolite’?

Why is it that when I choose to creatively redirect to attempt to avoid or diffuse a meltdown, I’m seen as a ‘pushover’?
When I don’t scream at her as she complains that the meat or dairy aisle in the grocery store is ‘too cold’ no less than 1,000 times, but instead promise her that we’re ‘almost done’ and offer to leave the area for a few moments to get another item, why am I seen as ‘letting her run things’?
When she refuses to eat nearly every food I fix for the rest of the family or when I pick a restaurant based on what I hope she may be able to eat there, why am I accused of ‘not being in control’?

Just because Autism/Asperger’s were not a part of your generation or if the knowledge is simply new to you, why would you discount it as ‘not existing’ or blame it on my lack of parenting skills?

I’ve managed to raise an amazing 9 year old girl against all kinds of odds (teenage mother, single mother, working mother, shared custody that isn’t always shared fairly) who is now in math an entire grade level above where she should be, is a straight A student and most importantly she is compassionate, healthy, and loving. Of course she is 9 and has her moments; we all do. The point is– if anything, my parenting skills have gotten BETTER. I breastfed longer, am a stay at home mom married to a great man, I discovered babywearing and full time co-sleeping…. how would you think that I could make choices that would create an older neurotypical child yet those same/better choices would later create an autistic child?

My Girls

Today my facebook status at one point was “Tweaking my pandora halloween station while i clean…… avoiding the (COLD!!! NOOOO!!!!) grocery store.. ” and a friend commented asking if the weather today was cold and followed up with her lightbulb moment where she remembered that Marley hates the cold aisles.

I don’t expect everyone in my/Marley’s life to remember every detail about what she is sensitive to– that’s my job, it’s a HARD one, and it changes by.the.second.literally.

I do expect to be supported. I do expect to be respected. I do expect questions (even if I don’t always have the answers).

I will not allow my child to be set up to fail. I will not tolerate her being shamed for things she cannot control. I will gladly educate a lack of knowledge, but I will not subject myself, her, or her siblings to willful ignorance.

I do my best to discourage inappropriate actions that she exhibits due to age or imitation (of other children in her life or media).  It is a hard, thin, not so straight line I walk when trying to discipline effectively, appropriately, and consistently while not punishing her for things she cannot control (meltdowns that seem to come out of nowhere or reactions to things she deems ‘itchy’, ‘tight’, ‘cold’, etc).

Punishing Marley for meltdowns or reactions to stimuli/triggers/sensory input is like smacking someone for coughing when they have the flu or sneezing during allergy season. Right now, her (intense) reactions are as automatic as breathing. I’m doing what I can to teach her to regulate her behavior when things are uncomfortable, but she is at neither the age or maturity to grasp every single concept and distraction technique I present her with.

I apologize in advance for those times that this means she will scream/cry/grit her teeth/shake with frustration/lash out in your presence. I apologize if it makes your dining experience unpleasant. I apologize if it means you don’t want us to come over. I apologize it it makes you uncomfortable. I apologize if it makes you sad for me– you shouldn’t be. I apologize if she hurts your feelings by being brutally honest in an inappropriate or impolite manner– if it makes you feel better, she tells me I’m “almost fat enough to have a baby” and that I’m ‘squishy and comfy’.

There are many things I can apologize for. Unfortunately, there are many more things I can’t.

I can’t apologize for your judgments. I can’t apologize for walking away when I hear you talking about her none too quietly as she wears a formal dress with a hoodie 3 sizes too big with leggings and actual leather ballet shoes. I can’t apologize for the fact that she’s right– we are overweight and yes, she does notice that pimple on our chin.

But the things that bother me the most that I can’t apologize for….

I can’t apologize to HER enough to make your reaction sting any less. I can’t apologize to HER and make her ‘normal’ (neurotypical). I can’t apologize to HER and take away the itchiness. I can’t apologize to HER enough for her to forget about coming to your house. I can’t apologize enough to HER SIBLINGS for them to accept that some people are just not accepting and that somehow a 9 yr old girl understands more about Asperger’s than most adults I encounter.

Recently we made a weekend trip to Washington, D.C., and visited the zoo there. A few days later, Marley came into my room when she woke up in the morning and said “Mommy, what does ‘hyper’ mean?”. I asked where she had heard it and she replied, “At the zoo. There was a little girl and she wanted to come play with me and I wanted to play with her, too, but her mommy said No– that I was ‘too hyper’.” My heart broke as I told Marley that hyper meant ‘playful’…. she just couldn’t understand why a person would see that as a bad thing and why that mom wouldn’t let her little girl come over to see Marley…. That is something that I definitely can’t ‘apologize away’.

If this post has made you stop and think– if really want to understand Marley, read the following links and watch the video at the end of this entry. If you have any questions, feel free to ask me… whether it is via this blog, on the facebook page, or in person.

Link 1: http://life-with-aspergers.blogspot.com/2007/11/aspie-meltdown-insiders-point-of-view.html 

“Meltdowns and Punishment–
One of the most important things to realize is that Meltdowns are part of the Aspergers condition. They can’t avoid them, merely try to reduce the damage. Punishing an aspie for a meltdown is like punishing someone for swearing when they hit their thumb with a hammer. It won’t do any good whatsoever and can only serve to increase the distance between you and your child.

In addition, meltdowns aren’t wholly caused by the current scenario but are usually the result of an overwhelming number of other issues. The one which “causes” the meltdown is the “straw that breaks the camels back”. Unless you’re a mind reader, you won’t necessarily know what the other factors are and your aspie child may not be able to fully communicate the problem.

Meltdowns are part and parcel of Aspergers – they are NOT the result of poor parenting”

Link 2: “10 Things Every Kid with Autism Wishes You Knew”. Since Autism is a spectrum disorder (and Asperger’s is on the ‘high functioning’ end of that spectrum) you may not recognize every single quality in Marley.

This video shows what a teen girl with Asperger’s experiences when she is in sensory overload. I feel like this is where Marley is when I see her start to have an emotional reaction to something uncomfortable for her or when we have overstayed our ‘welcome’ –time she can tolerate– in a store (or even in someone’s home).

-Carmen

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