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Category Archives: Diagnosis

Baltimore bound… again!

Living 3-5 hours from Baltimore, you’d think that I would have been there many times in my 28 years– they have an amazing aquarium and the inner harbor has shopping, museums, and quite a few activities for families. My first trip to Baltimore, however, was in 2009. I was a few months pregnant with Killian and Ben, his dad and I took the girls for a day trip. We went to the aquarium, rode on the dragon boats, and visited the Maryland Science Center.

The girls looking out of the aquarium into the harbor.

This year, I’ve been twice.

First in April when I took the kids on a road trip to Vermont. We stopped for an overnight in Baltimore on the way back after stopping in New Jersey to visit Carlo’s Bakery (Cake Boss). Before heading home the next morning, we went to the Inner Harbor and visited the American Visionary Art Museum¬†(this is a must see if you have kiddos!).

At the American Visionary Art Museum

Then last week when Marley, Killian, and I went to Kennedy Krieger to meet Dr. Tierney (&Alli!) to get Marley diagnosed. I didn’t get many pics (other than in the hotel room), but it was still an interesting trip even though we weren’t able to visit the Inner Harbor again. I did find it interesting though, that the cake I made that weekend for a friend’s son was a Baltimore Orioles Baseball cap! It brought back great memories from elementary school– Johnny Oates was my substitute gym teacher and on his last day, he brought us each a signed photo card. I realized that I still had it tucked away, and as much as Baltimore is beginning to be a part of our life, baseball isn’t… so I gifted it to the birthday boy with his cake. I’m not sure who was more excited– him or his dad!

 

 

 

I found out yesterday that we are scheduled for our third trip this year. As I was working to finish yesterday’s post, I received a call from Dr. Deepa Menon. We are scheduled to meet her on 11/21/11. I have decided to leave Killian home with Ben while Marley and I make the trip. It was a tough decision, but Killian has been doing much better lately (allowing Ben to put him to sleep and comfort him, etc.).

I’ve been looking back through Marley’s medical records, cursing myself for being such a ‘relaxed’ mom when it came to milestones– I’m still like that, of course, but I see the value in documenting them now even if you don’t keep track of if the kiddo is ‘early’/’on time’/’late’. I’ve been looking through her seizure videos and will likely end up posting them in an entry soon just to have them all in one place.

I honestly do not know what I have done to reap such blessings as I have lately– the doctors we are meeting and the evaluations we are having done are typically not without a considerable wait and great cost.

Ten days away from more answers….

“Well at least you know…” Part 2

“When can I get my blood shot?”

“Is it time for my blood shot yet?”

“Can we get my blood shot now?!”

Never in my life would I imagine that I would have a child who was so intent on having labwork done. I had been honest and upfront with Marley about what to expect at our evaluation appointment. I let her know that the doctor would be checking her blood for cholesterol. She needed to know exactly how that would happen, so I showed her some phlebotomy diagrams and instructional videos on YouTube. She was able to see the vacutainer, butterfly needle, cleaning procedure, etc. shown step by step. It seemed to calm her fear that the tech would hit her bone.

For days before we left she would ask if it was time for her ‘blood shot’ yet. Done with hearing “soon” or “tomorrow”, on the way to Fredericksburg to stop for dinner she asked if we were getting the ‘blood shot’ that night when we arrived in Baltimore. In an attempt to avoid a meltdown over this (again), I told her that it was really late but that I would call the hospital when we left and see if they were still open.

Yes, I lied to her. I had tried unsuccessfully to explain it to her, and I’d like to think that overall I do a pretty good job of keeping her in the loop and answering any questions she throws at me. At this point, though, I was exhausted and no matter how many times I told her when the blood draw would happen she is not the best with timelines.

As we got down the road, she would ask once more. I told her that I would call, but that it was late so they may be closed. She then surprised me. “If they are closed, do we get to go to the hotel first?”, she asked. I told her yes, and asked if that is what she wanted to do. She said yes, that she wanted to get to the hotel, but that I should still call the hospital first. I breathed a sigh of relief– it’s so much easier when she’s on board!

From the moment she woke up the next morning, she was again fixated on the blood draw. She kept repeating her phrases over and over, despite being told ‘later’ or ‘soon’ or just plain being tuned out as the first doctor spoke with me. When it was finally time to go to the lab, Alli walked us down. Marley was excited to take a ‘secret tunnel’ Alli showed us which was painted in an underwater themed mural. She ran slightly ahead and pointed out animals along the way.

Once in the lab area, Marley and Killian played for a bit before it was time for Marley to go in. She jumped right up on the stool and thrust her arm out. The tech was surprised and suggested that Mo sit on my lap to be a bit more comfortable. When the latex band went on, she was not impressed. Knowing that ‘tight’ frustrates her, I had prepared her for the fact that this would be tight on her arm but that it is not on for long. In retrospect, maybe I should have tried to show her by a quick visit to our pediatrician’s office for a ‘this is how the band will feel’ rehearsal. (Yes, Dr. Young is just that awesome!) Eh, hind sight & all that jazz… Anyway, she was not a fan of the band, which lowered her tolerance just enough for the needle to bring on the tears and complaints. She kept her arm perfectly still despite wanting to be finished. She didn’t move a muscle or attempt to pull away. We are all shocked at how well she did. After the blood draw was over, the tech wrapped Mo’s elbow in gauze tape. (That stretchy bandage material that sticks to itself.) Well, to get it to stick, you have to stretch it a bit– you know, tight. Pink and purple hearts be darned– Marley wanted this thing OFF. Alli and I both offered to take it off for her which would have been fine except for the fact that she was convinced that she was going to bleed out/fall off (or something) and wouldn’t let us near it.

I still had a good bit of paperwork to do and Marley was given a boxed lunch to eat. We sat in an exam room in the lab area and a few moments later Marley declared that she needed to pee. Since I was eyeball deep in paperwork, Alli asked Marley if she could walk her to the restroom. Marley was fine with that and let us know that she would need help with her pants with a worried “But my arm is BROKEN!!”. ūüėČ I nodded to Alli that it was ok, and the potty trip was uneventful. After a bit longer, Marley was done with what she could eat of the lunch (lettuce from the sandwich, pretzels, a cookie or two, and a Sprite), the room was beginning to get stuffy, and Killian was not happy to be in the stroller. Alli suggested that we could go back to their office building and set up in a room that was larger for me to finish while the kids could be less confined. That was perfect, and we headed over.

I worked my way through the pages of questions. At one point there was a sheet that listed symptoms/disorders and with check boxes under the headings of “Mother”/”Mother’s Mother”/”Mother’s Father”/”Father”/”Father’s Mother”/”Father’s Father”. Without going into too much detail, I think this would be an excellent checklist for at risk teens who want to get pregnant– it was enough to make ME reconsider having kids… and mine are already here! ūüôā Items like “has had trouble with the law”, “suicidal”, “depression”, etc. are listed and I must say, it makes you think about what you’re throwing into the gene pool!

It wasn’t long before Dr. Tierney came in. By this time, Killian was tired and so he was on my lap nursing. She offered to give us time to finish and I cracked my typical “You’ve got boobs/I’ve got boobs” reply and she assured me that she didn’t mind a bit, so we got down to business.

I have since realized that these¬†questionnaire’s are not only about how I¬†answer the questions, but also how they are expanded upon for¬†me. When the first doctor had asked me about Marley making up words, I said yes, but drew a blank– only thinking about the (many) nonsensical words she comes up with that have no basis in reality or phonetics (which means I don’t commit them to memory since she will only inform me that I’m saying them wrong anyway). When Dr. Tierney asked, she followed with “such as creating other words for¬†¬†things…”– THIS was what I needed. “Yep! ‘Zombie garden’ for¬†cemetery, ‘squirrel peanut’ for acorn, she does that for a lot of things!”

As we went through the many questions, she was patient and understanding when I couldn’t answer a straight “Yes” or “No”; I realized that I prompt Marley often (as I do with all the kids in an effort to teach manners and proper socialization) such as prompting for “Hello”/”Goodbye”/”Please”/”Thank you”/etc. This is all well and good until you have to recall the last time your child said this or gave a gesture (for hello/goodbye) of their own accord or in response to someone without a push. Questions like “Does Marley show you things?” “Does she point?” were hard for me to answer. Yes, Marley asks me to come see a drawing or brings it to me, but in the car or on a walk she’ll simply say, “I saw a cow/dog/airplane.” in more of a informative way than a ‘I’d like you to see, too’ way.

Thankfully, Dr. Tierney is much better at this than I am. After an hour or two of questions, observing and talking to Marley, she looked at me and said (and I won’t even claim this is verbatim; I think there was a preceding phrase¬†affirming¬†that I wasn’t nuts, and if not, it came just after)…

Marley has Autism. She’s a tough one– she can make eye contact and has an interest in being social even if it isn’t working, but she does have Autism.

At this point, I cried. I think this particular flow was tears of relief. Especially as earlier that very day, I had felt that my moments of denial and questioning myself seemed to gain the upper hand as a doctor told me that she “didn’t see ASD”. To have been so close to going home with that… and now I’m being told that I’m right. I’m not crazy. I am in tune to my child and no, this behavior isn’t typical.

She mentioned that since Marley didn’t qualify for her study, she would bring me information on another. A developmental pediatrician named Dr. Deepa Menon is doing a study on macrocephaly and Autism. I never thought that Marley having a head in the 98th percentile would be a good thing, but it seems that for now it is. (It also explains her disdain and sensitivity to ‘tight clothes’– neck holes are her #1 trigger in clothing fit.) Dr. Tierney also mentioned something that I’ve told our pediatrician and a few close people without me saying anything to her first– it’s almost too coincidental that Marley had the Myoclonic Seizures as a baby and now has another neurological issue.¬†¬†I hope to speak to Dr. Menon about a possible link as well; it’s nice not to feel like a conspiracy theorist. ¬†She then took us into her office and wrote up a letter for the school system. Since I had so much trouble with my GPS on the way in, she asked Alli to get me directions for the way home and even highlighted a map for me. She told me to take some time to process this and then send her an email or call with any questions. I thanked her and joked that I had already decided to limit myself to sending Alli one email each week with all my questions from the days prior so I don’t flood them. We said our goodbyes and were on our way.

The trip home nice, the kids both slept the entire time. I called Ben and briefly explained things to him. I sent a text to our pediatrician to give her an update as well. Traffic was typical, but decent for rush hour in DC. I woke Marley & Killian up a little over an hour from home to stop for dinner/snacks and to get a Cinnabon. I didn’t expect the Cinnabon signs to lead me to a truckstop, but they did. It was a huge one and quite the adventure for the kids (ok, and me, too!).

Chlo√ę and Ben were glad to have us back and the littles were glad to see them both.

I will say, I was blindsided by how right Dr. Tierney was. When she said to take time to process this, I didn’t ‘get’ it. Like the soda for the road that Mandi ordered me at Sammy T’s, I didn’t think I’d need it.

I was wrong.

 

 

“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 Chlo√ę 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/Chlo√ę 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…. ūüôā (along with the adventure in the lab– that was hilarious!)

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.”

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, Chlo√ę 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 Chlo√ę 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

Barbie Girl

I feel that I must preface this entry with a few things:

-I do my best not to purchase ‘character’ clothing for my kids. If they have on a ‘character’ piece of clothing or own a toy, it was either a gift, hand me down or on 50-70+% off clearance. I get so frustrated on the markup on character items and do my best not to contribute.

-I do not typically condone or suggest ‘leashing’ your kids.

With those things aside….

Today is the first in three days that the kids have been able to play outside due to Hurricane Irene. Luckily we had minimal clean up and the large branches that fell missed our house. The temperature today is lovely and there is a nice breeze. It’s threatening to storm, but we managed to sneak in about 30 minutes of playtime.

The kids wanted to play with our newly acquired Barbie Jeep. I loathe this thing.

I saw it in our neighborhood for sale and thought about telling Ben, but I ‘forgot’ to (aka came to my senses). However, he walked through the door that evening cryptically whispering to me about wanting to take Marley to go try it out. I agreed.

They came back an hour or so later with the Jeep and word of a new friend. (That’s another post entirely!) What¬†Ben failed to tell Marley was that the $25 jeep didn’t come with a battery and it would be the next day before he could go buy one. That didn’t stop her or Killian from begging to go drive it.

I spent the next twenty minutes pushing the blasted Jeep around the front yard and longer than that calming down the kids after dragging them out of the mosquito infested front yard and into the house.

So far, the Jeep has been anything but fun.

*No trees were injured in the making of this photograph/blog entry.

Marley has a very hard time driving it in our yard and Ben.. well, let’s just say I don’t imagine he’ll be the one teaching the kids to drive.¬†The stick that you use to shift to reverse has to be pushed towards the floor to do so– which makes no sense to me (or Marley). Essentially that is ‘forward’ placement but makes you back up. And Heaven forbid you pull the stick ‘up’ to drive forward– the top most setting is ‘Drive it like you stole it’ and the middle is the more reasonable ‘Go’ speed. Also, the seatbelts are simple straps with velcro that are loose on chubby Killian even at their smallest setting– Can I get a 5 point harness!? ūüėČ

Marley constantly steered into trees, off the curb and into the road, or way too close to our own vehicles. I finally put a piece of painter’s tape on the steering wheel and cut it to a point in a last ditch effort to help Marley understand navigating this beast.

I know, I'm a genius.

So, anyway– I loathe it, but the kids love it/Ben paid for it even though he doesn’t have to ‘deal’ with it.

Today, I had an epiphany.

Yep, that’s a dog leash. What can I say? I’m a thinker! (Bracelet courtesy of ¬†The Whole Network.)

Now, like I said– I don’t condone ‘leashing’ your children, but technically I was leashing the Jeep! We headed out to go around the block and down into another part of our neighborhood. We only made it about halfway down the next street before the thunder started and it began to sprinkle. Of course, this was when Marley was FINALLY beginning to understand how to steer and drive at the same time without crashing into things (& that doing so makes turning MUCH easier).

For your viewing pleasure– here’s Marley in “Park it Like it’s Hot” (a mommy-made original movie).

I’m thinking that with the addition of the tether and the navigation system, ‘The Beast’ could become something really great. It keeps the kids contained on a walk, it gives Marley something to focus on so that she isn’t bored 3 minutes in, it helps me/us learn to communicate effectively with her in ways that she understands, it promotes bonding & sharing by allowing Killian to ride along/take turns, and it gets me out of the house (unless it’s hot. or raining. or muggy.).

Communicating effectively has been a challenge for us– especially Ben. Marley (and kids in general ‘on the spectrum’) operates by a whole other set of rules. She sees the world differently and even being with her nearly 24/7 since her birth 4 years ago, I am still learning to adjust my expectations or rethink how I say/ask/do things to avoid a meltdown or to help her understand/execute something.

Saying it louder/more sternly/with anger accomplishes nothing. Phrasing it differently (in my mind before I say it ‘wrong’ and mess up the possibility) does.

Bargaining doesn’t always work. Sometimes bribing does. Bribing with gummy vitamins to get her to brush her teeth (with toothpaste for more than 3 seconds) twice a day is a win/win!

It’s ok if she wears full snow gear to the grocery store if it means I get to shop.

Allowing her to touch produce I’ve selected (which she is the main consumer of) is completely acceptable and she LOVES it. ‘Sizing’ (weighing) them is like a dream come true for her and allows us to talk about numbers and practice recognition.

It’s ok for her to touch every.single.item. in the craft store. Twice. This does not mean it wasn’t a ‘good’ trip and yes, she can still get a small toy or lollipop at the end.

It doesn’t matter what order she eats her food in, as long as she eats. Of course, it helps that the kid craves fruit.

Letting her wear the same ‘comfy’ clothes for days at a time is totally fine– as long as she changes her underwear.

Shampoo is optional.

It’s ok if she can’t spell her name/draw a square/recite her address/recognize more than 4 letters of the alphabet (M, B, X, O). She’s 4. Do you know what a 4 year old should know?

I often get messages on my personal facebook page regarding help with various mommy issues. Often it is related to breastfeeding. This past weekend a friend messaged me late at night as she struggled with nursing her newborn. They were still in the hospital as the baby was born earlier that day. The momma was in pain and the situation was frustrating. I sent her some information and links. I also told her

”¬†keep in mind that while you are both made for this & you’ve breastfed before, you just met and she has never nursed before.”

Can’t that be said of many things in parenting? Each child is different, and I think that parents come to that conclusion easily enough on their own and adjust accordingly. However, when you’re parenting a child whose basic wiring is so different from your other children/your friend’s children/children you’ve babysat or see in public, the advice holds even more truth.

“keep in mind that while you are both made for this & you’ve raised a child before, you just met __need/challenge__ and (s)he has never lived with it before”

Yes, I know that some of us knew ‘something was different’ for long before a formal diagnosis. I know that some parents that read this may have a child with a genetic condition that was diagnosed before/at birth. You may have read about it or seen it on a tv show/movie. You may have a relative/friend with it. Yes, I know your child has lived with it their whole life/months/years before you found this blog or got diagnosed. But, what I mean is that you just met this need/challenge in YOUR child you are learning TOGETHER. They haven’t lived a life with it, figured it all out or how to navigate the world comfortably and then come back as a child to start over and exhaust/test/frustrate you. They don’t have all the answers and neither do you or I, but that’s ok because the journey is so much more than the destination.

“Marley, stop…”

4.8.11-

A trip to the craft store used to be a challenge… or so I thought. I’m not the most organized person, so really it was my own fault. I used to beg Mo not to touch… not to linger… to ‘keep up’ and bribe her with a $.39 lolli.

I still promise her a lollipop after a ‘good’ trip, but my definition of good has been altered. I have no choice but to be organized and we linger– a lot.

“Marley… stop(!!!)” is said so often that a more confused child may believe it’s their full name… thankfully, My Marley recites her whole name anytime she is asked what her name is and is in no danger of confusing the two.

Today we spent a good 10 minutes in the bead aisles while she touched everything within her reach. The feathers were ‘itchy’. The beads were ‘broken’ (had small pits in the surface) & ‘smooth’. She also noticed a dinosaur that was ‘squishy’, a palette knife was ‘smooth’, boas were ‘soft’.

Then we went to lunch. Whipped cream was ‘soft’. Chicken was ‘chewy’. Drink was ‘tasty & cold’. Fish are ‘squishy’. The fortune cookie was ‘hard & yummy’.

Phrases said that day that I never imagined I’d say to my (almost) 4 year old included : “Don’t put your shoes in your mouth.” & “Don’t put blueberries up your nose.”

_____________________________________

This is a snippet of one day of being Marley’s mom.

A 'crunchy & sweet' lunch.

I wouldn’t trade it for the world.

When Marley was born, everything was ‘typical’. She was a healthy kid until she began having myoclonic seizures at 8 months old. We put her through a battery of tests for months, but nothing came back of any concern. Eventually she stopped ‘tic-ing’. She broke her arm running on carpet in the living room when she was about 18 months old, but the buccal fracture healed uneventfully and she hasn’t had any major problems since.

She was breastfed since birth (until she was nearly 3 & her brother was born) and never did care much for table food. I babysat other children from the time she was about 10 months old and she would gag at the sight of their jarred baby food. She wouldn’t take a bottle, and if she had to be away from me she wouldn’t take formula or pumped milk. When she did finally wean and start eating table foods, she was picky– there was no “just ONE bite” with Marley. If you didn’t want to get vomited on, you wouldn’t force the issue. It wasn’t a manipulation– there wasn’t ‘crying until she vomited’, it simply would hit a point in her mouth and be rejected involuntarily. She could tell the moment a suspicious food touched her lips if the texture pleased her and no amount of begging would get it past that point. I remembered when she was younger being baffled at her ability to gnosh on tortilla (etc.) chips while a simple bowl of mashed potatoes left her gagging as she struggled to eat. I jokingly tossed around words like “sensory issues”, but I didn’t have a clue. When she was so young, we were more worried about her seizures than her (not) eating solid foods (she was always in the 90th percentile¬†for growth, so we had no worries about failure to thrive or anything).

As she got older, the phase “Oh, Marley…” was as common as ‘hello’ & ‘goodbye’ in our house/family. I was concerned about her social skills and my sister in law worked at an amazing preschool 40 minutes from our home, so we enrolled her two days per week with the goal of ‘socialization’ more than ‘education’. Unfortunately, after less than 6 months, I withdrew her. The drive was long, but more than that, from what I observed during my visits, Marley was still playing ‘beside’ other children as opposed to ‘with’ them– and the ‘friendship’ she seemed to have actually appeared to be a love/hate relationship with a girl Marley was constantly tattling on for things like pushing Mo or refusing to play with her.

Marley continued to exist on mainly fruit, pancakes, chocolate milk and ‘chicken on a stick’ from our local Chinese buffet. It wasn’t long before Spring was here and she needed some new clothes. She had suddenly began rejecting everything in her closet as ‘too itchy’. She stopped wearing socks and wouldn’t allow any clothing with graphics, embroidery, or glitter. She became frustrated with her bob haircut and deemed the hair touching her neck and ears to be ‘too itchy’. After 2 different trips to Great Clips it was finally short enough– my sister-in-law (and a young teen boy in the shop) commented that she resembled Justin Bieber. (They were right and she was ADORABLE.)

Shortly after that first hair cut, we attended a birthday party for a friend’s son that I had made the cake for. It was at a large park with many other children playing. Marley would approach these children and introduce her self “Hi. I’m Marley Kirra B(lastname).” and each group would ignore her. I finally prompted her to say that but add ‘may I play with you?’ to it. She continued to be turned down and before the end of the day had even gotten mulch dumped on her head. She did, however, enjoy spinning at warp speed in something that looked like the bottom half of an Easter egg shell. In fact, we began to notice at home that she not only liked to move but that she seemed to need to move. At my grandmother’s house Marley would spin in an office chair regardless of us telling her to stop or slow down. Much to my husband’s dismay, she would jump on beds at home seemingly ignoring threats of early bedtimes or ‘thinking time’. Can’t you just hear us pleading, “Marley, stop…!”? I finally made the connection that maybe she honestly couldn’t stop… and after a few weeks I talked Ben into bringing home a small trampoline for the playroom. When she would get antsy, we’d encourage her to ‘go jump’. Her newest ‘movement’ is running from one end of the living room to the other– and ‘go jump’ does not seem to be the answer to that.

I finally put these last few “Oh, Marley…” things together and Googled until I found information about “Sensory Processing Disorder”. I bought “The Out of Sync Child” and had Amazon send it right to my Ipad. I think it took me 2 days to finish… I read pages every chance I had. I highlighted and bookmarked in the app as I read things that screamed “MARLEY!!!!” at me. I did checklists and made notes. Suddenly, everything made sense. Marley is a nice little mix of a sensory seeker & avoider, but I was able to recognize her ‘Seeking’ behaviors (jumping on the bed, scouring the fridge for a crunchy food or eating marshmallows for their ‘rough squishy smooth’ progression, constantly hugging/snuggling/touching her sister/brother/dad & I) and her ‘Avoiding’ ones (certain clothes, long hair, unwanted touch, changes in routine, transitions, food aversion that meant the only place we could eat as a family was a buffet with tons of options or risk Marley eating only an apple or slices of orange for dinner).

Our (amazing) pediatrician agreed that we were looking at SPD and that I should look into early intervention/evaluation services though out local school system. I also began taking Marley to a local counselor we used in the past for her older sister. Just over a week ago during my time speaking with the counselor we talked about Marley’s singing (& how she could totally be a YouTube superstar), her antics that week at Vacation Bible School (everyone had a story about her and the video of the final night is hilarious) and I brought up Asperger’s. The counselor agreed that she did see some things that may point us in that direction but that it may also be ‘just Marley’. Having a professional validate my concerns was enough that I came home and did some research for myself. There’s no hardcore test online that will tell you if you/your child is an aspie… there are a few that will give you various scores (which lead me to posting the links on Facebook tonight– that was good for a laugh!), but there is no one definitive checklist it seems. There are traits, but your child may or may not exhibit them.

Since Marley LOVES to talk, imagine, and perform (all very much on ONLY her terms, mind you) a diagnosis of something on the Autism Spectrum doesn’t jump right out.

When I consider:

  • her ‘interests’ and the degree to which she talks about/elaborates on them regardless of if a person is actually listening (she loves zombies and will inform you quite plainly that she is a ‘vegetarian vampire’ and just what that means),
  • ¬†her “other family that lives in China” that she speaks of as if they are as real as I am (stating “my other mom bought me a piano.’ as we stroll through Target),
  • her multiple sensory issues (needing to hide, jump, run, eat based on texture as opposed to hunger or taste, touch, etc with no concept of if such a thing is ‘ok’ or not),
  • the fact that she doesn’t actually have a friend or playmate (even as I observe her at the local YMCA she is playing on her own or watching out for Killian),
  • when I look over her preschool evaluation that was done just prior to us removing her and she can identify only 1 letter in the alphabet, no numbers, and each geometric shape she was supposed to copy looks like a “W” had a baby with a ramen noodle.
  • ¬†each night as we struggle with getting her to ‘try’ to go to the restroom before bed (an abstract concept, as she doesn’t currently have to pee and doesn’t understand why she should try),
  • as I walk into Walmart on a 100* August day with a child wearing corduroys+a winter coat + a toboggan AFTER the 2 hour fight to even get her to agree to come to the ‘cold’ store and hear her answer the greeter asking her “Are you cold?” with a flat “No.”,
  • as I remember the past weekend when a neighborhood child came over only to be screamed at by Marley to breaking unwritten rules in a game that doesn’t exist,¬†thinking later into the day when Marley would not give that same child an inch of space and hugged her too tightly repeatedly while the girl stood motionless, the reaction when we finally took the girl home as Marley asked when her ‘new friend can come back’…
  • the fact that she can recall times, places, smells, sounds, and tiny little details that she has no reason to remember and isn’t bombarded with pictures of…
  • that she would wear the same clothes for weeks if I’d let her & in the same token hates being bathed to the point that I have gone the ‘no poo’ route for her haircare
  • she flips if there is the slightest change in plans, even if it is better/for her enjoyment
  • she will often create dialogue for when she speaks to you “No, you are supposed to say __________.”
  • She’s about as literal as Amelia Bedelia and often gets angry when someone’s ‘funny’ analogy makes no sense to her and is/seems impossible

When those kinds of things hit me all at once or little by little, it’s those times when I think that having a full evaluation to see just what needs she has isn’t the worst idea ever.

So.. that’s where we’ve been.. I hope you’ll stick around to see where we go. ūüôā

Oh, and if you need a laugh… these are the links to the videos from VBS. Marley is in a white dress (she was NOT putting on an ‘itchy shirt’).

The Island Song (poor kid was battling a rogue visor!)¬† and He’s Got The Whole World in His Hands (silly visor. the show must go on.)

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