PDD-NOS

This is the diagnosis given to Juliette by the Crystal Charity Ball Autism Project at Children's Hospital in Dallas yesterday. The center incorporates expertise of clinicians and researchers from UT Southwestern Medical Center, University of Texas Dallas and Children's Medical Center Dallas. Juliette was evaluated for over 2 hours by a team of psychiatrists/psychotherapists, and speech experts. Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is the diagnosis given when there are some symptoms present on the spectrum but not enough for it to be classified as autism. The evaluation was daunting but Juliette was such a trooper and handled it very very well. The evaluation began in a small room with a one-way mirror. It was a weird feeling knowing people were watching but yet you could not see them. There were 2 therapists in the room with us playing with Juliette with various toys, creating different scenarios in order to see Juliette's reactions to them and some pretend play. Juliette did great on most of these things but I could tell there were a few times that the therapists did not get what they were looking for from Juliette. For example, the first therapist uncovered some sort of mechanical bunny rabbit that hopped around like a real live bunny. This caught Juliette's attention right away and at the same time the second therapist began shooting bubbles through a bubble machine off to the side. Juliette should have noticed the bubbles with her peripheral vision and should have at least glanced over to look at them, even for a second, but she never saw them. She remained completely focused on the bunny. After about an hour and a half of playing they asked me to leave the room so that they can continue playing with Juliette and I can proceed with the parent interview portion of the evaluation. Once we were done we were given a 2 hour break so I had just enough time to take Juliette home, feed her a quick lunch and put her down for a nap. When I returned I met with all the doctors who took part in her evaluation and we discussed her PDD-NOS diagnosis and intervention.

As soon as I got home I sent an email to two of my friends who have children on the spectrum. One who has a son who had a similar diagnosis as Juliette and another who has a daughter that is much more further down the spectrum. Both said to me the same exact thing. PDD-NOS is a promising diagnosis and that most kids diagnosed with PDD-NOS, if they receive intense therapy and the correct services, can lose their diagnosis. PDD-NOS is the only diagnosis where you can "cure" autism.

The following are the symptoms they saw in Juliette broken down into 3 categories: social, communication and unusual behavior:

Social - impairment with eye to eye gaze, facial expression and body posture to regulate social interaction. She lacks initiation in play to seek shared enjoyment with other people.

Communication - Juliette is moderately delayed in speech. Although she is improving in speech everyday and talking a lot more, she does babble and uses jargon in between actual words to express herself. She also echoes, repeats words or phrases she hears on a daily basis. She also lacks in varied, spontaneous make-believe play.

Unusual Behaviors - Juliette used to flap her hands/arms when excited when she was younger. I haven't noticed this behavior lately but during the evaluation they noticed she likes to rub her fingers or flap them alot. She also likes to spin, usually she does this in her crib. She also likes to pull or twirl her hair.

So we definitely have our plates full with the amount of therapy Juliette will be getting from here on. With the support of EIS and her current therapists we should be good. I am just so grateful that I am able to stay home and not worry about juggling work and time off for her appointments. However, financially, with the out of pocket expenses we will incur, we'll have to tighten up our belts as insurance will not cover everything.

First Day at School!

Today was Juliette's first day at Preschool. I think I was more nervous than anything, although I did my best to try and hide it. I don't think Juliette caught on because she was very content all the way to the "school house" as she likes to call it, up until I told her that Mama would be back later to pick her up. She immediately began to cry and I told her not to worry, that she would have fun and Mama would be back soon. I kissed her on the cheek and walked out the door. I could still hear her cries as I made my way down the hallway to the front office. After a few minutes of signing last minute paperwork I asked if I could just peek in one last time to see how she was. Through the window I could see Juliette sitting down at the little table along with the other kids, she had a crayon in one hand, but did not seem interested in coloring at the moment. She was studying the room and people around her, she looked a little confused and a little scared but she was not crying. I felt my eyes well up with tears and knew I had to get out before my emotions could get the best of me. I made my way to the car where I could not hold back the tears any longer. After a quick cry and after running all my errands it was time to go and pick up Jules. As I pulled up I could see she was crying, holding the teacher's hand. As soon as she saw me her little face lit up like a light bulb. I scooped her up and gave her a big hug and kiss. Miss Kristy (one of Juliette's teachers) said she transitioned very well and only started crying as she walked her out the door. She said Juliette had a GREAT day.

Emotions Running High

Its been a while since my last post but things have been busy in the Marriott household. We have Fred's 20 year old son now living with us permanently. Its an adjustment so I really hope he enjoys this time with us and hope that this change will be a positive experience for him. He needs it.

Juliette has improved leaps and bounds in speech. She is saying so much these days..."down slide" when we are at the park, "go outside" when she's bored with her toys and wants to go out and play, "need medicine" when she gets a coco, "bye bye pee pee" when she hears a toilet flush. Its amazing how much she knows.

Last week I toured 2 different preschools for Juliette. I decided I want to put her in a part time program, 2 days a week MAX with half days preferably from 8am-12pm. Unfortunately there's not a lot of options like this in the area. For most preschools in the area, part time is considered 2 or 3 days a week from 8-6pm (a full day). This is NOT what I want. Sorry Tutor Time! I keep thinking Juliette is only 2 years old, whats the rush? For me I believe this is a nice balance between getting her accustomed to structure in a classroom & socialization and spending time at home with mum. The way I see it, she will be 3 before I know it, then 4, then 5 and she's off to Kindergarten all day. So why pre school full day so soon? I don't see the need to rush. She's getting everything she needs and then some. How many 2 year olds do you know that can already count to 10, knows most of their ABCs, and knows all of the basic shapes including octagon and pentagon?

The first school I toured was a recommendation from Juliette's developmental therapist, Apple Creek Private Preschool. First impressions wasn't the greatest but I've seen high recommendations from reviews on the web and the therapist had nothing but great things to say about them. They have low teacher/child ratio, 12 kiddos per class with 2 teachers, plus they had exactly what I was looking for in regards to their 2 year old program. The second school, Carpe Diem, had exceptional reviews as far as I could tell from my research and the facility was incredible, with web cams for the parents to check in on their kiddos throughout the day, whenever they please, however, they only offered the full day 2-3 days weekly program. I found out real quick that the Apple Creek Private Preschool is the popular choice for parents around here most likely due to their part time/half day program option. There was a waiting list to get in and entry is done by lottery during their registration period. UGH! Then to my surprise the following week I get a phone call from Apple Creek and they have 1 open spot available. YAY! So Juliette starts November 2nd. Emotions are running high. I know this will be good for her but Not EVERY child is the same just as not EVERY 2 year old is ready for pre school. Only time will tell. It'll be interesting to see how she does. It'll also be interesting to see how Mom does ;)

Time Out!

Yesterday, for the very first time, Juliette was put in "time out". She had been hitting mommy, for fun, for several weeks now and the manner in which I had been handling it was NOT hitting home for her (no pun intended). My job is to nip the bad behavior in the bud before it gets worse.

At first she thought it was funny, as if Mommy was playing a game or something but I tried to show no emotion and stay calm. I decided to use the bottom of the staircase as our timeout location. I got the idea from an episode of the Super Nanny and the family she was working with used the bottom step of the staircase as their timeout location.

I realized I could not place her in timeout, walk away, and expect her to stay put. Instead I had to stand as a barrier with my back turned away. She tried several times to escape and with my back turned it was difficult to prevent that. I decided I needed to sit her down and hold her there with one hand, with my head turned away. After a minute it no longer became "fun" to her so she started getting upset. After her 2 minutes were up I got down to her level, looked her in the eyes and told her that Mommy put her in timeout because she hit Mommy and hitting is a NO NO. I asked her to apologize but of course that wasn't going to happen because of her speech delay so I asked her for a hug instead and I told her I loved her.

I am very sure it will take close to 1000 time outs before Juliette begins to realize that a "time out" is not a game and Mommy means business.

Please give what you can!

So far we've raised $2300 for SMA research. I am asking all my family and friends to please please please give what you can. $5 $10 $20, even the smallest gift can make a BIG impact.

Wont you please help these babies. We are sooooo close in finding a cure!

http://www.firstgiving.com/juneangelbaby

5 YEARS!

IN 5 YEARS we may have a treatment for spinal muscular atrophy (SMA). The #1 genetic killer among children under 2 years old. I'm re-posting this because I realize the last post on this topic was massive and you may not had time to read the information I provided. So here's the 411...

Currently SMA is a death sentence! But there is hope. Do you know that researchers are on the brink of a cure! 5 YEARS!!!! According to the National Institute of Health (NIH) "SMA is the disease CLOSEST to TREATMENT"!

This is important to me for sooo many reasons. 1. Because I am a mother, and 2. Because my mother had Parkinson's disease and my father had Alzeimers disease and research for SMA will benefit advancements in more than 600 neurological disorders like Parkinsons and Alzeimers! I don't know about you but this blows my mind!

A cure is possible with funding. So please do what you can and donate. Be a part of a miracle! Help to save lives! Go to http://www.firstgiving.com/juneangelbaby

Thank you!

More New Words!

Today Juliette and I were playing a game that she absolutely loves to play almost daily. I call it the "Swiper Chase". While humming the swiper tune (dah-dah, dah-dah, dah-dah, dah- dah), holding her Swiper doll, I pretend he's lurking at her from behind the couch or coffee table, then he comes after her while she runs and screams in delight. She loves it. Today Daddy asked her "What does Swiper say?" and Juliette responds "Oh Maaan!". It was hilarious and the cutest thing I ever heard. I'm amazed at how much she is saying these days and she hasn't even started speech therapy yet. She actually starts next week so I'm excited to see how much more she will progress with therapy.

On Tuesday morning we took a tour of Tutor Time, a preschool near our house. As we walked in the entrance to the office, Juliette looked around and pointed to the ceiling. She shouted clear as day "octagon"! I looked up and sure enough the entryway ceiling had architectural detailing in the shape of an octagon. Needless to say I was proud as pie and the woman in the office, who was the owner as it turned out, was beyond impressed. She said she has never ever heard anyone notice it before. LOL!

Can you donate to a good cause?

Have you heard of SMA (spinal muscular atrophy)? I never did until a fellow mommy on the parenting board I belong to lost her sweet baby June to SMA. June was only 2 weeks old. Since losing her sweet baby June, Molly has done all she can to spread the word to raise awareness and support for SMA and her friends have come together to help her carry out this mission. Wont you please help by making a donation in honor of sweet angel June Marie Howsden?

SMA is a disease that attacks the neurons responsible for muscle movement. It is the #1 genetic killer of children under the age of 2. 1 in 40 Americans carry the gene that causes the disorder. Amazingly enough, the National Institute of Health has selected SMA as the closest to treatment of more than 600 disorders, including Parkinsons and Alzheimers. Leading US researchers have stated that a viable treatment for SMA is possible within 5 years IF they are provided the proper resources.

Our goal is to raise $10,000 by October which would have been June's first birthday.

If you can, please help and click on the link below to make a donation. No donation is neither too big or too small. Anything you can give will be a tremendous help to all families who are dealing with this in their everyday lives.

Thank you.

http://www.firstgiving.com/juneangelbaby

To learn more about SMA please watch this 13 minute video

Invisible Heroes (Full Version) @ Yahoo! Video

EEG normal!

Juliette had her EEG on Monday morning Aug 9th. The procedure was extremely difficult. We had to hold her arms while she layed down on a bed while the nurses prepped her for the EEG, marking her head with a pen or marker to indicate where the discs needed to be. It felt like an eternity before they finally got her hooked up and Juliette was so tired from all the struggling and crying she became calm after a while. I was able to crawl into bed with her and snuggle to help comfort her. Out of frustration or anger she managed to give a few slaps to mommy's face. I felt so guilty it was out of the question to try and discipline her after all we put her through. We were able to get the results back later that morning ...NORMAL! A huge relief for mommy and daddy. We are so incredibly grateful and thankful for that!

Next steps... get a second opinion on the ASD diagnosis and continue with physical therapy (although Early Intervention Services do not seem to think its necessary nor do they believe she has low tone) and speech therapy. Juliette will start speech therapy on Sept 2nd. Lately I've been feeling 100% confident things will be OK with our little princess. Over the past few weeks Juliette has shown so much progress in speech (and she hasn't even started therapy yet). Everyday, several times a day, she points to me and says "Mama". Its as if the flood gates of speech are beginning to open up for her. Today Daddy shared an ice cream with Juliette and when the last piece of the cone went into Daddy's mouth Juliette raised her hands in the air and screamed "ALL GONE"! Today, the first time ever, she put 2 words together. Daddy and I couldn't be more pleased.

MRI NORMAL!

Today was Juliette's MRI. I've been dreading this day. It was definitely one of the most difficult days of my life. To watch while your child is being held down on a table, her eyes filled with fear, while the anesthesiologist places the mask over her face, she struggles for a few seconds and then she's out. I whispered into her ear before we were asked to leave the room "mommy is near".

The procedure took about an hour and then she was wheeled out into the recovery room. It took a few minutes for her to open her eyes, and when she did I scooped her up and held her in my arms. Once we got home she was wobbly, irritable and super cranky. We were told by the nurse that this was to be expected. She didn't want to be held, you could do nothing right. Luckily it only lasted for about an hour and then she was back to her usual, sweet, quirky self.

Later that afternoon we got the call from the nurse. NORMAL! Thank God for that and a huge relief. The next step, an EEG. The neurologist ordered these tests only because of the birthmark on Juliette's back. She says that birthmarks can be an indicator of a neurological disorder. I know that lots of kids have birthmarks but when you combine Juliette's symptoms, speech delay, low muscle tone and possible ASD raises a red flag. We decided to call the neurologist just to confirm if an EEG is really necessary since the MRI came back normal. Hopefully its not, but if it is, they will need Juliette to be sleep deprived for the procedure.

This means that she can get NO MORE than 4 hours sleep the night prior to the procedure. Considering she gets 11-12 hrs sleep every night, this is no easy task. Is this insane or what? Lets hope its not necessary. Pray, Pray.