Visit with Dr. Bauman & John's Diagnosis

On Tuesday, John, Bill and I visited Dr. Margaret Bauman, who is an Autistic Specialist in Child Neurology out of Massachusetts General Hospital. She works with Children's Services at Casa Colina and travels every quarter to visit. We had an hour-and-a-half appointment with her for a second opinion/diagnosis and next steps.

First of all, I want to say that it was a pleasure to talk to her. She does research into the causes of autism, as well as treating patients with Autism and has a good understanding of the development of children. She suggested so many things and gave us such a good analysis of the situation.

To see Dr. Bauman, an exetensive packet of information must be supplied that includes birth records, hospital records, any testing scores, analysis, or assesments, etc. She also met with John's teachers at Casa Colina and spoke to them about their observations. When Bill, John and I arrived, we went into an office with lots of toys to keep John occupied. (6 months ago, they wouldn't have kept his attention, but today, John was able to play most of the time without being re-directed. During the last half hour, he became more 'needy' of my attention and even started to do things like climb on the table and laugh after I told him to stop)

Dr. Bauman talked to Bill and I a long time, asking us questions about his development, behaviors, things we've noticed, therapies we've done, improvements we've made, etc. After our discussion, she gave us her assesment of John.

She believes that John has PDD-NOS. To understand this, let me break it down.

PDD is the category, which is Pervasive Developmental Disorder.
There are 5 disorders that fall under the PDD category. They include Autism, Asperger's, Rhett Syndrome, fragile X syndrome, and PDD-NOS.

In simple terms, the NOS, means Not Otherwise Specified, meaning that many symptoms are present that resemble those other 4 disorders, but not enough to receive a diagnosis.
Now, to make it clear, PDD is the autistic SPECTRUM, so all 5 of these diagnosis are on the spectrum, but to a varying degree, with PDD-NOS being the one that shows the least amount of symptoms.

There are a few things that she pointed out that are a cause for concern. A few that we talked about are:
- his lack of interest in people, limited eye contact
- his play skills (allows others to set the framework of play and then he 'learns' play, rather than naturally picks it up)
- his irregular sleep patterns
- sensory issues
- eating issues

In moving forward, she would like to find out WHY John is showing these symptoms and if other things are wrong. She is sending us to 3 other specialists to begin with.

1. a developmental optomitrist - She wants visual perception, visual tracking, and depth perception looked at. Not what he sees, but how he sees. This could lead to an explanation of limited eye contact or limited social interaction. (From PubMed.Com: The role of the optometrist in treating children experiencing learning disabilities embraces numerous areas beyond the customary optometric services. Etiological, diagnostic and therapeutic factors are discussed stressing visual functional disorders, perceptual-motor and developmental lags and cognitive style.)

2. a Gasteroentologist, which will test him for acid reflux, which could explain his poor sleeping patterns, resulting in tired, lazy, and poor concentration/attentive skills. She also wants them to confirm or rule out a lactose intolerence, so we know if we should keep him on or off dairy.

3. a Neuro Psychologist that would look at cognitive skills and agree/disagree with the diagnosis. A neuropsychologist is a psychologist who specializes in studying brain behavior relationships. Neuropsychologists have extensive training in the anatomy, physiology, and pathology of the nervous system. (Sensory issues & problems deal with the brain's inability to process the information correctly that the nervous system is sending it) This person can also be involved in the IEP (Individualized Education Plan) meetings with the School District. She can help to be an advocate for John's Educational Needs.

After seeing these 3 specialists, we will then re-visit Dr. Bauman in January.

The other thing that is recommended to do is at Casa Colina. We are getting a swallow test done with a speech pathologist. The teachers at Casa think he is aspirating while eating. (inhaling food/debris into the wind pipe or the lungs) This is caused by apraxia or low tone in the mouth. Basically, poor oral motor skills causing his muscles within his mouth to not work together while eating. (She also told the START teachers that we may want to consider a sleep study because if he is truly not sleeping well, it would explain many of the symptoms John shows during the day from lack of sleep.--although she didn't mention it to Bill & I)

Now, as far as moving forward with his "education", she gave us a bunch of advice. She says she does not want to see him in an autistic class or a class with kids who have behavioral problems because she believes John needs models in the classroom to teach him how to interact socially. She is afraid that it will hinder his development to "learn" by picking up on autistic behavior and not have a model that he can raise up to. She said that Katie has been John's best teacher and helps to structure his play.

So, she recommends that he be put in a preschool program that is "integrated" with children who are "normal" , as well as slightly delayed, but not with kids that have behavioral problems for fear he'd model the behavior. She wants him in the bottom or the middle, as far as skill set, but not at the top. She says other states have wonderful programs for this, but she doesn't think California has anything set up like this. She said that the integrated class would have 2 teachers and then a one-on-one aide for John to be guided back into participation if he wanders.

For me, Dr Bauman's words, diagnosis, and advice validated all the feelings that I have had --- some days feeling like it's "textbook autism" and then other days that seemed like the diagnosis was wrong. But, to be clear, the diagnosis was never wrong. 6 months ago John was a different kid. He had no speech, his cognitive level was very immature, he had no joint attention (ability to point out objects), etc. After understanding this disorder, the only diagnosis he should have received 6 months ago was autism. The fact that we are at PDD-NOS is an indication that early intervention is working, that Neurofeedback is working, and that with prayer, hope, hard work, and a battle plan, there is a chance for healing.

John's New Results

John was assessed on Sept. 8, 2008 for entry into the START program. I recently received his results. At the time of the assessment, John was 34 months old. There have been 3 assessments where I can compare his progress. You'll see the May 2008 scores, which were the Regional Center's. Second, you will see his Casa Colina July 2008 update scores. Finally, you'll see his latest Sept. 2008 scores.

---------- May (30 mths ) / July (32 mths ) / Sept. (34 months)
Gross Motor --- 26 months / 26 months / 16 months (??)
Fine Motor --- 21 months / 23 months / 31 months
Cognitive ---- 21 months / 24 months / 28 months
Language Receptive ---- 6 months / 17 months / 33 months
Language Expressive ---- 9 months / 17 months / 31 months
Socialization ---- 10-17 months / 10-17 months / 29 months
Self Help ---- 23 months / 23 months / 24 months

Other than Gross Motor, John improved since July and dramatically since May.

During the time from June-Sept., he attended Early Start Preschool at Casa Colina, had Speech Therapy two times a week, 5 hours a week of in-home, and 40 sessions of Neurofeedback. He began OT/SI the first week of September.

It is worth noting here: Neurofeedback claims training can make a child with autism attentive, calm, and sociable. We have seen certain behaviors disappear and have watched John become calm. John is a different person today than he was 6 months ago when all of this started. It is hard to say what specifically helped John because we've been doing so much. However, the Neurofeedback seems to show us some patterns that are worth looking into. First, when we changed his protocals (the location of the EEG monitor, training a specific part of the brain), he began to have accidents in the seat and aggressive behavior seemed to manifest. We removed those protocals and went back to the old ones and there were no more accidents in the seat during the sessions and his aggressive behvaior seemed to go away.
Secondly, for the last 4 weeks, John has not attended Neurofeedback (he went 3 times over the last 4 weeks, as opposed to 5 days a week that we were doing before)--- first, due a family vacation and then, due to a death in the family. Over the last week-to-week-and-a-half, Bill and I have noticed that typical Autistic behavior (and some sensory issues) that had seemed to disappear has returned.

Things like:
Biting & chewing on shirt
Biting own skin
Chewing on objects
Frustration level is awful
Cries inconsolable again
Angry - bangs hands on table or objects when upset
Has been hard to take out in public - clingy, whiney, cranky, tantrums
Cries when I leave him in class

Tomorrow, John will begin a normal schedule of Neurofeedback training of 5 days a week. I'll report back to see if these disappear once we resume it. The goal of Neurofeedback is to train the brain to self regulate. After a repeated number of sessions, the brain will "remember" its training and be able to self regulate on its own.

He also has developed a cold. I notice that everything seems to be magnified when he's sick.

This week is a big week. Tomorrow, we go back to Neurofeedback. Tuesday, we see Dr. Baumen, an autistic specialist. Wednesday is John's assessment with the public school system and Friday is Halloween!

Eating Problems

Yesterday, John's teachers told me that they fear John could be aspirating when he eats. They recommended I get a swallow test done to check it out.

I thought I'd use today's blog to discuss aspiration. Using NYU Medical Center Online as a resource, here is the information I found.


"Aspiration is the abnormal entry of food or liquid into the windpipe and subsequently into the lungs. Aspiration is important because it may lead to the development of pneumonia and/or long term lung complications. Normally, food and liquid are diverted around the breathing passages and directed into the esophagus. In certain disease processes, however, these mechanisms do not function normally, and aspiration occurs.

Aspiration may be detectable as a cough or gagging associated with food or liquid intake, or it may have no associated symptoms. So-called “silent aspiration” is troublesome, because if is very difficult to detect."

It can cause Aspiration Pneumonia.

About.com defines aspiration Pneumonia as : "Aspiration pneumonia is an inflammation of the lungs and bronchial tubes due to the inhalation of food, drinks or other foreign matter into the lungs. It occurs most often in patients who have difficulty swallowing or controlling their gag reflexes. The gag reflex keeps "foreign" material from entering the lungs and causing infection. "

Symptoms of Aspiration Pneumonia include:

Fever

Cough

Fatigue

Chest Pain

Shortness of Breath

Cyanosis of the skin

Rapid Heart Rate

Wheezing

Grandad

Grandad died this morning at the hospital. Two weeks ago, he broke his leg and needed surgery to fix the leg and replace his 20-year old fake hip. He's been in the hospital since and has had different complications over the last week. This morning, he died after coughing a bit, when his heart stopped.

Grandad was a soft spoken, gentle man who was the wisest guy I know. He'd take it upon himself to learn about how things worked and how they went together. If anything was broken, Grandad could fix it. Consumer Reports was his magazine and he'd know what products were recommended and why. Grandad was funny, religous, and a strong father to 6 kids. He kept a journal for the last 30+ years -- I think he started in 1965 and continued ever since. He'd right down the facts --not really emotion, but things that happened that day and a few messages to his kids, knowing they were reading them. All his journals are there in his room.

All of my life, Granny and Grandad would have lunch at their house on Wednesdays for her family that could be there. On a regular basis, my aunt Karen and my Mom would be there, with their kids. Sometimes, there would be others in the family that would stop in on Wednesdays, knowing it was "granny's for lunch". While I was in school, summer and holidays meant we got to join the group for Wednesday lunch. When I went to college, I got to go more regularly, since ULV had no classes on Wednesday. Since having children, I have been able to take my kids there every week to hang out with Granny and Grandad. Bill, working close, would also join us for lunch. I would plan my week around that lunch. Nothing could be scheduled Wednesdays at noon. I remember disctinct time periods where the lunch changed... first it was tacos, then hamburgers, then chile rellenos and zucchini, then a diet chicken fajita with rice, and then back to hamburgers, where it has stayed for a long time. For the last year, my mom started picking up El Pollo Loco soft tacos for those on diets and Grandad would always say to us, "I don't see you guys losing a lot of weight eating those tacos". That's because we would then use the tacos as an excuse to eat all the candy Granny would put on the table after lunch! Grandad would always give Bill his finished copies of Consumer Reports and Popular Science. My husband, the researcher, and Grandad got along well. ;)

I am SO thankful for Wednesdays. My kids knew my Grandad and he knew them. I knew my Grandad. And I'll always remember him. I Love you Grandad.

Clingy Parent?

After our trip home from Maui, we had to drive the next morning to Las Vegas for a family wedding. A drive to Vegas, a long rehearsal, and the rehearsal dinner, kept us on Hawaii time. We slept in late Saturday and then got ready for the wedding. There were no time for naps, so at 6 p.m, John thought it was 3 p.m. nap in Hawaii. He had a meltdown during the cocktail hour and Bill took him to the car to watch a movie to settle him down. I went and got the boys, taking the movie away and causing another tantrum. I took John into the reception, where he continued to cry until he fell asleep in my lap. I woke him up by accident 20 minutes later and he wasn't happy. I walked with him outside and Bill got the portable DVD player. We put John on the floor by our chairs with a movie and calmed him down. He watched it for 20 minutes and then decided to dance with the other kids on the dance floor. He was happy for the rest of the night, but it looked a little rocky at first...

Between Bill and I, we watched John like a hawk. Many other parents let their kids run around, checking on them every once in awhile. But, with John, we have to have a constant eye on him. Many that don't understand John's issues may look at us and think that we are too clingly, too protective, and too worried. But, turning our back could mean John going into the kitchen, leaving the room, going up with the band, getting into the open fireplace that was in the same room, but around the corner, etc. There were too many opportunities for us to "lose" sight of him or enable him to get into things he shouldn't. John will take any opportunity given to him to run in the opposite direction. He often will look back, knowing he's being chased, and laugh. But, if your not watching, he's gone. (like at the grocery store with Bill when he saw the elevator and climbed out of the car shopping cart)

John's comprehension level of what he can and cannot do is definitely improving from 6 months ago, but it's not that of a 3 year old yet. He's still immature and delayed. He can, at times, show responsibility and understanding, but consistency is not there yet. First and foremost, he's a kid. Secondly, he's almost three, but still a 'terrible two'. And thirdly, he's autistic. Whether or not others want to see it, Bill and I face other children his age that prove to us that John is different. Right now, that label is autism and whether or not that changes in the future doesn't matter. We have to live for today and that's what it is, regardless of whether others think it is or isn't, or the severity of it. In day to day living, that's what this is for us--the here and now.

Through the successes, you have hope, but you also must recognize where the challenges lie. You must remind yourself where the differences are between your child and others so you can help your child in those areas of development. If you are not willing to recognize it, you will not be able to help to your child. You have to acknowledge the developmental differences and fight with your child through those struggles. There is always hope and you have to fight for it. But don't let parents of other children make you feel like you're "too protective" or "too clingy". When people say "relax", what they don't realize is that this IS your state of relaxation with your child -- the peace in knowing that you are watching him and that all is going to be ok.

Again, Again

John loves the ocean and Katie loves hula girls! Katie got a grass skirt and wants a flower in her hair. John bought a stuffed animal that is a turtle on vacation and loves it. (it plays an awful song that is out of key that none of us can get out of our heads!)

Today, we went out driving and stopped at different lookout points and took video. The kids napped and Bill and I were lazy. We then went on the water slide AGAIN and AGAIN! Everytime we went down, John would exclaim "Again, Again!" His whole body shows enthusiasm at the top of the slide as we talk about who goes first, second, third and forth. I usually go down first, followed by Kate and John, with Bill taking up the rear. Katie flips and flops, and ends up on her stomach, head first, diving from the slide into the pool, and swimming to the edge by herself! (thanks to those swimming lessons!) John comes barrelling down, twisting, turing, backwards, and up on his hands and knees, with a HUGE smile on his face. He plops underwater, and is pulled up by his life vest. He hates water in his ears and usually comes up using his hands to rub his ears. Then, he stiffens up his body and says "dadd-n", awaiting Bill's entrance into the water! After Bill comes splashing in, John is quick with "again, again".

Once the water slide closed for the evening, we headed over to the Pirate Pool. It's a children's pool (8 inches deep), with a pirate ship in the middle. There are lots of squirting tubes, tunnels on the bottom, and 2 slides from the deck into the water. There are pads at the bottom for the kids. Parents can sit on the side and let the kids roam free, depending on how busy the pool is. This evening was really mellow, so Bill and I sat on the edge and John and Kate ran around, free--the way they prefer it. John would climb up the boat, go to the captain's wheel, spin it a few times while being sprayed from overhead, then run down two steps and fly down the slide into the pool. He'd walk around and go up the main stairs and start his ritual all over again---great occupational/physical therapy if you ask me! Katie met a friend at last night's Luau at the hotel and she was at the pool this evening. So, Katie and Hannah (also 4 years old) played in the pool together.

As mentioned before, John loves the ocean -- and wanting to be free in the ocean. He loves the waves "to get him", sliding down the sand hill into the waves, faking out the person watching him and running the opposite direction around them to go into the ocean, and allowing the waves to throw him around. Fighting the current, being tossed around, and running up and down in the sand has been great for John's muscles. He's gotten some great excerise and therapy out on the beach.

It's been a great vacation and we'll be heading for home in a few days, but tomorrow... it's the glass bottom boat.

Road to Hana: Perfect (almost)

We took the kids on an 11-hour day trip to Hana yesterday in the car. John and Katie were awesome! Katie and I got car sick in the last hour of the trip, but all-in-all, this day trip was better than anyone could have asked for.

John watched movies, listened to an ipod(which he can say perfectly), played leapsters, and loved to get out of the car and 'hike'. Katie watched a movie on the ipod, and the DVD player, and loved to talk with the adults in the car.

I can't beleive we actually made it all the way to the Seven pools. We had plans to turn around when we thought everyone had enough. We got up at 5:30 a.m. and started with Starbucks and the grocery store. we packed sandwiches for lunch and got "halfway to Hana" by 11:15. Steve, SeAnna, and Bill decided to park on the side of the road and take a 45 minute hike, while the kids and I STAYED IN THE CAR. We played, sang songs, and John pretended to be the "driver" and everyone seemed fine to be left in the car!

John and Katie slept for an hour after lunch. Katie was excited because she has a girl named "hana" in her class this year. She kept asking if we were 'there' yet. She liked the "rain forest" and John was happy to "ride in Uncle's van". I am still in shock that the trip went so well.

There were two moments that seemed like "here we go" moments, but they worked themselves out. They both centered around the DVD player getting stuck and Daddy having to save the day. John kept saying "John's turn" and seemed like it might turn into a meltdown, but Uncle Steve discovered that saying "uh-oh" is fun and joined in. After that, all was well and we made it to swim in the pools past Hana... then we had to make the 3 hour drive home! Katie and I got sick on the side of the road -- but we were both in better spirits once we felt better! :)