Wednesday, October 29, 2008

Understanding PDD-NOS

Understanding PDD-NOS

I've come across many explanations for PDD-NOS. Some say PDD-NOS is just a euphorism for autism. Some say that PDD-NOS is not on the autism spectrum. Some say that it is but not severe.

I came away with the following conclusions for my understanding.

  • PDD-NOS is a diagnosis given to children 3 years old and under because doctors feel it's too early to determine if the child has autism.
  • PDD-NOS is a disorder on the autism spectrum, but the behaviors and symptoms displayed do not totally fit the classic definition of autism.
  • PDD-NOS is not necessarily a less severe version of autism.
  • Children with PDD (Pervasive Development Disorders) do not necessarily learn from their surroundings as typical children do, and that's why...
Early intervention and intensive, good-quality ABA (Applied Behavioral Analysis) are said to be crucial in helping the children learn, become social and perhaps lose the PDD-NOS diagnosis.

Tuesday, October 21, 2008

Hearing Test at Columbia in November

I'm really looking forward to this. I want to know for sure that Jaden's hearing is okay. Columbia has to give him their own behavioral hearing test before referring him to a ABR hearing test. Columbia has the new technology to perform the test without sedation.

UPDATE: According to Columbia's behavior test, Jaden demonstrates at least normal hearing. The ABR testing was not necessary. And the technician said that his results were not nearly as bad as the results given on his first test.

One difference that I think helped was there were two people conducting the test: one inside the booth with me and the person operating the sounds. I was very pleased!

Wednesday, October 15, 2008

Helpful Websites about Autism and PDD-NOS

Friday, October 10, 2008

Inconclusive Second Hearing Test

My son took another hearing test at a different facility. Again the results were inconclusive. The administrator said his hearing level is below normal but she couldn't tell if it's because of hearing loss or because he wasn't cooperating with the test.

She recommended doing the test again at a different time of day or the sedated-ABR. I'm going to call the Columbia to make an appointment for a non-sedated ABR.

Tuesday, October 7, 2008

Experiencing Early Intervention

The Early Intervention experience is okay so far. It's just that the time to get the evaluations done was long. I called in July. The services coordinator came right away. It was everything else that was slow-going (mainly due to fiasco with first psychologist.)

To determine Jaden's eligibility for services, he was seen by a multidisciplinary team of evaluators:
  • a speech therapist
  • a special education teacher
  • an occupational therapist
  • an audiologist and
  • a psychologist
The speech therapist said that it looks like his receptive language is delayed and that may be due to his hearing. She recommended for us to get his hearing tested and she recommended a psychologist. Hearing test--okay. Psychologist? I wasn't sure why. When I asked, she just said that the psychologist may help us to determine why he's not talking.

I took him to get his hearing testing and the results were inconclusive. The audiologist said that in the booth, he responded to some sounds and ignored others and sometimes it looked like he heard something, but nothing was played. When she tried to put plugs in Jaden's ears, he wasn't having it. She recommended him redoing the test or getting a sedated ABR hearing test. I wasn't thrilled about redoing the test in 3 weeks because it might be inclusive again.

I was interested in the ABR hearing test, but I didn't like the sedated part. I did some research on the internet to find out more about this test and came across a site that developed non-sedated ABR technology. I called them up to find out if there were places in my area with their technology. There were. The first center I called said they had stopped using the technology. I guess because the technology is still somewhat new, they have some issues to work out. So at this point we are waiting for his next hearing test appointment.

All the evaluators noticed that Jaden didn't respond to his name. My husband and I noticed that too. We would say to each other, "Look at how he's ignoring us." We didn't really think he had a problem with hearing, but I wanted to know for sure. I was so disappointed that his hearing test couldn't solidify that for us.

The special education teacher said Jaden made good "b" and "d" sounds. But his speech is severely delayed for his age. He also said that his temperament was calm and gentle--usually, children who can't communicate their wants and thoughts have frequent meltdowns and are somewhat irritable.

The occupational therapist was interesting. She asked about his pointing (he finger feeds himself Cheerios.) She tried to get him to color on paper (she said he should be scribbling more.) She noticed Jaden putting everything in his mouth (we know that.) She noticed him looking at us from the side of his eyes (I didn't notice until that day and haven't seen him do that since.) She asked if he stumbles a lot (no), knows fear or how to be careful (I believe so. He climbs up on the table and carefully climbs down.)

I asked her if Jaden's putting everything in his mouth is a bad habit that can be broken. She said the OT will give him a sensory diet to satisfy his urge to have something in his mouth. I'm thinking if he gets various textures of food, maybe he won't put inappropriate things in his mouth as much. She also noticed that he likes to throw himself on the sofa and bean bag. The OT, she said, will most likely bring tunnels for him to crawl through to satisfy that need and to teach him how to look for and find something he likes at the end of the tunnel.

Now the psychologist. After playing phone tag for a few days, the first psychologist to call me kept asking me why did I think Jaden needed to see a psychologist. I said that it was at the recommendation of the speech therapist and special education teacher. They felt that a psychologist could help determine why he's not speaking. She asked me if, other than the speech, there were concerns I had about his development and behavior--was he overly aggressive, or reclusive. I said no. She said that normally when parents want their child to see a psychologist, they have a concern about certain behaviors and things like that. So we decided that if I felt I needed her services at a later time, I'll call.

When Early Intervention followed up on that appointment, I told them what was said. The gentleman didn't understand why the psychologist questioned me like that and didn't make the appointment. So they had another one to call me.

With the second psychologist, Jaden was a little miserable because he had just woken up and he wasn't feeling well. He was very clingy to me. But the psychologist said that he could see right away that he's not making eye contact and I can't remember what else. The doctor sat down with me and said that Jaden is not talking because he hasn't learned how to communicate. He made sure to explain that it's nothing I've done or didn't do. Then he gave an example that every family has an Uncle Joe who didn't speak until 5 years old. The difference is Uncle Joe still knew how to communicate what he wanted by pointing, nodding, and gesturing.

He said that I would have been very disappointed with just speech therapy because Jaden hasn't learned the basics of communication yet.

He wrote on a paper PDD and showed me how it's broken down.

Pervasive Development Disorder
  • Autism
  • Asperger's
  • Rhett
  • Childhood disintegrative disorder
He said Jaden's condition is called PDD-NOS and that good, intensive communication therapy involving ABA (Applied Behavioral Analysis ) would help him learn how to communicate--make eye contact, point to what he wants, etc.

I mentioned that Jaden grabs and pulls. He'll grab my hand to color a picture or he'll pull on my shirt for me to pick him up. But that wasn't acceptable communication according the psychologist.

I'm grateful to this psychologist because I was wondering if there was a name for this "severe speech delay." I thought about autism. My mother even mentioned it, but I didn't want to be the one to offer that term. I wanted to hear first what "the experts" thought it was, and I thought I had to wait until our family meeting with the evaluators to find out. At least now I can come better prepared with questions.

Another observation that all of the evaluators pointed out was Jaden walks on his toes. I'm aware of the neurological implications toe-walking has. I looked it up because Jaida, my oldest, walked on her toes too and still does. I'm not too concerned about him walking on his toes, but I'll look into it again.

Sunday, September 28, 2008

He's Not Waving "Hi" and "Bye"

Here's some background that shows how we got to the point of a PDD-NOS diagnosis.

I can't recall exactly when, but my husband and I had noticed that Jaden didn't wave "hi" and "bye." He wasn't really imitating what we did. I would clap my hands, he'd just smile at me. When I would clap his hands, he'd manuever his hands around mine and clap my hands.

Then there was him not speaking. He would babble and make sounds, but not words. No "mama," "ball," "uh-oh," "hi."

And why does he keep putting everything in his mouth? That boy puts everything in his mouth--toys, crumbs, his shirt, paper, books. People would ask me if he's teething or if his gums hurt. At 18-20 months old, I didn't think so, but I hoped he would grow out of that.

When Jaden went to his well-baby checkup at 15 months, his pediatrician was asking me questions like what words are Jaden saying, does he know his body parts. I had to answer "No." So the pediatrician said if he's not talking by 18 months, he will refer him to Early Intervention. He told me to work with him and we'll see.

The 3 months went by and no words. I struggled a little when the doctor said "work with him" because I felt that I'm already doing that. We (my husband, his 3 sisters and I) talk to him, sing to him, read books to him. "Maybe we could spend more time doing those things with him," I wondered. And this time I tried to focus on ball. Let's play with the ball. This is a blue ball. What color is the ball? Roll the ball. Do you want the ball. I figured surely by the time he's 18 months, he would be saying the word ball.

As an aside, honestly as far as "working with" Jaden, I wasn't sure what to do because I didn't have to "work" with his sisters in a particular way. As we played, the sisters learned gestures and words. The "work" I did with them was teaching them Spanish, and I didn't work with my twins as much as I did with Jaida, my oldest. But they understand and speak quite a bit of Spanish. And, between 9-13 months Jaida was identifying things in Spanish and pointing to her body parts when I said them in English or Spanish.

So I called the pediatrician and got the Early Intervention recommendation. He said to tell them that I want to get my child evaluated for speech delay.

Thursday, September 25, 2008

The Power of Confession

The Power of Confession (saying what God's Word says about you)

Over the years I've been learning how to exercise my faith in order to believe God and His promises. I've learned that in order for God's promises to materialize in my life, I have to find them (promises) in the Bible, believe them, and confess them (speak them over myself, my family, my friends, any situation.)

My confession over Jaden is: "Jaden, you are an eloquent speaker and an effective communicator in English and Spanish (and any other language you choose to learn). I declare this in Jesus' Name. Amen."

The following scriptures guided my heart to write the confession:

Jeremiah 1:7
Luke 4:18-19
Luke 2:52

Saturday, September 20, 2008

What is Jaden's Travels About?

My son, who's almost 22 months old, was recently diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).

Of course, I want to learn as much as I can about this disorder, what it means, how is it treated etc.

So that's why I started this blog--to document my research about PDD-NOS and to follow the various therapies and treatments my son will experience.

Thanks for stopping by and sharing your support.