Sunday, April 25, 2010

Reflective post!

In the past few months, Presley had made really great progress! I can believe how well she is speaking; putting together three word “sentences!” She’s so smart! I’m so proud of the progress she’s made and I’m looking forward to the future, because I know she’s only going to get stronger.

Since I’ve been doing my research in this blog, I’ve learned a great deal about different therapies, treatments and medical diagnoses. There’s so much great information out there and it’s all at my finger tips. I’ll never have the time to read it all, but I can try. Researching has lead to some unexpected surprises, as well as common knowledge. Being able to use the internet, instead of traditional research sources (such as, library databases) has expanded the information one is able to obtain. There are specific groups and organizations that specialize in research on Sensory Processing Disorder; they are a wealth of knowledge. I’m grateful for this project, because it has helped me learn even more about my daughter and helped me view things through her eyes.

I’ll continue writing in this blog, keeping everyone updated with Presley’s progress and anything new that may come up.

Again, I’m glad that she is making such great progress and I’m looking forward to the years to come!

Wednesday, April 21, 2010

A Mother's Courage: Talking back to Autism

Presley went in for a well check-up with her Pediatrician, last week. He brought up testing her for autism, again. He thinks that she has many characteristics and shows signs that of a child on the spectrum. I agree, however, both times she was tested she received the “it’s too early to tell” diagnoses. So we’ll try when she turns four. I’m certain, her Pediatrician is certain and most people who are familiar with Autism are certain.

Last week a watched a documentary on HBO called A mother’s courage: talking back to autism. It was fantastic. The Mother in the movie, from Iceland, has a son who is severely Autistic. He’s doesn’t have the verbal skills, to communicate. I was so impressed with this documentary!
-They showed a boy being tested, who is Presley’s age, who was way more “functional” then Presley and the boy got the diagnoses of Autism.
-They showed a woman, Soma Mukhophadhyay, who found a brilliant way to help people with Autism communicate. She does different stimulating activities and these children who, people though couldn’t communicate, spelled out various words! It was amazing to see them communicate!

From a press release on the website, to sum up the movie: “The film follows Margret Dagmar Ericsdottir, an Icelandic mother, and her severely autistic 10-year-old son as they travel to the U.S. to research new therapies in the hopes of unlocking the autistic mind. Over the course of her journey, she finds a glimmer of hope that her son may be able to communicate on a level she never expected.” The movie is spreading awareness of this autism epidemic, and giving parents with children on the spectrum a new perspective, as well as a glimpse of new therapies to try.

Which brings me back to having Presley tested, again. It gave me a positive outlook on the whole “Autism” issue, a new understand and “hope.” If she has it, I have all these new resources to try out and I know there are other mothers out there who feel the same way.

I really think everyone should see it.

For more information, please check out:

Sunday, March 28, 2010


prelsey 078
Originally uploaded by presleysyndrome
Since Presley was six months old, when we first started to notice problems, everything we’ve done since has been a fight, either a fight with doctors, the insurance company or with my family.

Most people do not know what Sensory Processing disorder is, let alone have even HEARD of it. I know I hadn’t, until my daughters OT casually mentioned it one day. I started to research it, I found that it fit her so well and that there are different treatments and therapies that can help her.

One of the problems with Sensory Processing disorder is that, again, it’s unknown. Children have been getting “diagnosed” since the 1970’s but there is not enough adequate research to give a FORMAL diagnosis. With more children having Sensory Processing difficulties and not fitting the “ADHD” or ”Autism” label, there has been slightly more information out there.

According to a TIME magazine article, which they interviewed members of the STAR center (a center that offers therapy for children with SPD), “SPD is not listed in medical texts or in the Diagnostic Statistical Manual (DSM), the bible of psychiatric disorders. Doctors acknowledge sensory issues as a common feature of autism and a frequent feature of ADHD but not as a stand-alone disorder.” With the official medical diagnoses going undefined it leaves parents, children, doctors and therapist with little to do. There is power in a official medical diagnoses, if children get the official diagnoses “SPD added to the next edition of the DSM, the fifth, due out in 2012. Earning a spot in the DSM V would make it easier for researchers to win grants, kids to get accommodations at school and families to be reimbursed for a course of treatment.” If SPD gets added to the DSM, there is more funding for research and thus a better understanding of what is going on in my daughter’s magnificent little brain. However, one of the biggest issues is that if SPD does get a validation, SPD could have a shot at being included in the DSM VI--due out somewhere around 2025. Presley would be: 19, a staggering thought.

That’s why it important for all of us to have a better understanding of Sensory Processing disorder. It’s important for parents/teachers/therapists to get the word out and spread information.

DSM- Diagnostic and Statistical Manual of Mental Disorders

Wallis, C (2007). The next attention deficit disorder? Time Magazine. Retrieved from:,9171,1689216,00.html

Monday, March 15, 2010


Originally uploaded by presleysyndrome
Presley’s speech is starting to grow more and more. Some of you may remember that she recently started to actually speak. She started school August 2009 and her speech “jumped” off around December 2009. I accredited much of that to school, as well as the intensive speech therapy she had from age 1 until she started school.

Generally children start to talk around age 1. They know at least one or two words. Presley had none. She screamed, a lot. Speech wasn’t even on my list of “concerns” with Presley. I was more worried about her lack of motor skills and screaming, more than anything. When we had her early intervention evaluation the subject of speech came up. They asked me general questions about her language abilities, and then it hit me: she had none!

According to common reasons for speech delays, include, but are not limited to: boys often develop speech later than girls, preemies have hard time hitting those “normal” milestones on time, multiples (twins) are usually premature or have low birth rates-so they have the milestone problems, children with chronic ear infections: most likely have poor hearing-so a delay in speech and kids who are focused on other skills.

Presley had none of those common problems. She did have a lower than average birth weight, but not anything for concern and she was not technically premature (I had her the day I turned 38 weeks pregnant). believes the best time to get professional help is when your child is around 2 ½, the age that late bloomers usually catch up. I disagree; you should get professional help as soon as possible. The earlier the better, your child has the best chance to succeed.

With that being said, Presley is now starting to say three to four word sentences. One of her favorites is: “I can’t reach it.” Though her speech is not where it should be, we are very happy and proud of the progress she has made.

I think I’ll end this entry with a small list of famous late bloomers in the field of speech: Gary Becker, Nobel prize-winning economist, Albert Einstein, Julia Robinson (the first women president of the American mathematical society!) and Edward Teller, physicist and nuclear power pioneer.

The editors of Parenting magazine (2010) Parenting Magazine Retrieved March 15, 2010 from:

Friday, February 19, 2010


We suspected Presley had autism. We had her tested twice, both with “too early to tell” results. When we did our second round of Autism testing, Doctor Oswald (the doctor that tested Presley the second time around) had recommended we get Presley into a play group, school, pre-school or other social environment. The importance of socialization was stressed in most of our clinical testing’s. I’ve come to realize the importance of socialization, recently.

Presley started to use to potty at school! I was thrilled! I mean, to anyone else, potty training is stressful, but the kid usually gets the hang of it. For parents of children with Sensory processing disorder, potty training is a huge deal. First the kid can be over sensitive to objects (a cold potty seat in the morning, anyone?) or be scared of the sound of the flushing or even not like having that “empty” feeling of not having they’re bum covered. It’s a huge deal, most mothers of children with SPD usually say they’re child was potty trained at ages 5-7. So, at Presley’s school, she sees another little girl in her class go to the potty and Pres grabs the teacher by the hand and used the potty! She followed the leader; saw what she was doing and bam! Potty master Presley! I’m of course, proud of her. I’m a little jealous that I didn’t get to witness it, but, nonetheless, very proud of her. That brings me to the importance of socialization for children with SPD.

Most people know the importance of socialization. Socialization teaches us appropriate behaviors, what’s the “normal” thing to do in a situation and appropriate customs. Not only that, but socialization teaches us fundamental behavior, language, self help skills, the list goes on and on.

Presley, being in school, is doing great things for her. Her language is improving, as is her play skills. The child development institute says, “During the period of social growth [in school] there will be minor triumphs, but the road will undoubtedly be rutted with an occasional major disaster. Parents should not be disheartened. Children tend to have spurts of physical, intellectual, and social growth laced with periods of holding their own or even periods of regression.” There have been small periods of regression (we got a bunch of snow here in VA, Presley missed about a week of school) but overall the growth has been phenomenal.
Being around other children is greatly important for children in general. Learning key play skills, as well as social norm’s by observing children is key. According to the Child Development Institute, “Children with learning disabilities may have difficulty processing information from the social environment or have difficulty with self-expression.”

For Presley, being in school has helped her a great deal. From the potty, to appropriately playing with toys, learning verbal skills from the other students, and being away from mommy and playing with the teachers/other kids, she’s learned from socialization.

The Child Development Institute. (2009, February, 19). Helping Your Child with Socialization. Retrieved from:

Wednesday, February 3, 2010

Feeding disorders

When Presley was about two we had an evaluation with the “feeding clinic” here in Richmond at the Richmond Children’s Hospital. We ended up not perusing the feeding clinic for various reasons, but recently have decided to give it a go again.

I fed Presley a meal yesterday of mashed green-beans, small toddler spaghettis and mashed bananas. She tongue mashed some of her food, while swallowing other’s whole. Her OT was here yesterday and “mentioned” she eats at a 9 month old level, because she hasn’t picked up the older skill of moving her tongue around to her teeth.

The feeding clinic here goes the behavior rout when it comes to therapy. They tend to use ABA (applied behavioral analysis) when feeding. They work on a reward system. You take a bite, you get a toy. Studies show that feeding disorders are usually prevalent with neurologic disorders as well as behavioral issues.

With that being said, Presley’s issue consists mostly of texture based foods. She prefers soft foods and will not eat anything hard. Hard foods would be considered, crackers, cheese, anything crunchy. In applying behavioral therapy to texture issues, “the procedure consists of presenting light and rocking motion and increasing the texture over time.”

One of the most important things in feeding therapy is parent training. In the intensive program at the feeding clinic, the parent/child goes five days a week for eight hours a day for six consecutive weeks and eats four times. The parent watches on video for the first couple of weeks, while the occupational therapist feeds the child, then the last couple of weeks the parent is “taught” and feeds the child in the clinic setting, so that therapist can observe and correct.
Most studies show that feeding therapy at clinical locations is favorable.

Shore, B. P. C. (1997). Pediatric feeding disorders. The Kennedy Krieger institute. Retrieved February 3, 2010 from,

Monday, January 18, 2010

Intro (repost)

**This blog was started in 2008 as a way of keeping my friends/family and strangers who have children with the same issues in the loop, with what’s going on with my daughter. For those of you who are wondering why I’m reposting an intro, it’s because, for my English class, I have to keep a blog. Most of the coming entries you will see are going to be research based. I’m looking forward to this project over the next coming months & being more informed, scientifically in what I have labeled ‘Presley’s Syndrome.’**

I've started this blog with the intent of keeping track of my daughters progress through therapy, as well as keeping her doctors, family and friends informed about whats going on.

Presley, who has a development delay has been informally diagnosed with Sensory integration disorder. We're in the process of having her tested for Autism or any other related disorder.

As I'm writing this she is 26 months old, we've had her in early intervention therapy for the past year. She is labeled as having a delay scattered between 12 to 18 months. Around 18 months she was seen by a local developmental pediatrician who thought she could have Autism but it could really go "either way." I was not satisfied with his session (an hour long, no bedside manor, no real interaction with Presley) and have made an appointment (March 5th to have her reevaluated by another team.

Here is a bit of what she has going on:
*Little eye contact, hardly turning to name
*Still eating purred baby foods, she gags on lumpy food, she has just started to properly "chew" but mostly swallows food whole.
*She spins in cirlces
*Sometimes hand flaps, hits her ears when she gets mad
*Not very social with peers her age, more connected with adults
*Has a big speech delay, shes at about a 12 month level for speech development. Her words consist of "hi" "hey" and rarley "All done"
*Shes very into being overstiumulated, lights, busy places and a lot going on she thrives in.
*She still wakes up around 1-3 times a night and has a hard time going to bed (she'd rather stand in bed and spin and play)
*Recently she has become very attached to myself and my husband (which is great!) before she could have really cared less if we were even around
*constant teeth grinding

So basically we're going to post videos of therpay sessions, photos of Presley being adorable and other random information.

(Presleys momma!)