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! :)

Maui: Plane Ride, Water Slide, & Work

The plane ride to Hawaii last Friday was awesome! John and Katie were calm, excited, and very well behaved!

John sat by the window next to Bill and Katie sat by the opposite window by me. Using a video iPod, portable DVD player, books, headphones, crayons, and activity pages, the children were kept busy and happy.

John kept saying "riding in airplane". He told us he was "happ-n" (happy) and didn't have a single meltdown. Katie was talkative and enjoyed every moment, taking it all in. Traveling was pleasant and everyone stayed in good spirits.

Once we arrived in Maui, there was Starbucks in the airport and all enjoyed some cake. Katie, my dad, Steve, SeAnna and myself went to check in, while Bill, John, and Grammy went to Costco and then back to the airport to pick up Erin. John had fun shopping at the store and told Grammy she had to "pay". As we use the stuff from Costco, he tells us he bought it at the store.

We've been here for almost 3 days now and everyone's had a blast! The first morning, John and Katie went into the ocean with their clothes on. After changing into bathing suits, they went on the huge twisting water slide over and over. John asks to go in the spa a lot, so we have termed the kiddie pool as a "big spa", which satisfies John. He loves the independence we give him in the "big spa". Bill and I can sit on the edge and allow both kids to roam around the kiddie pool, which is so shallow both kids can touch. There is a waterfall on one side of it, which makes it fun, and a stair around the other part. John wears a lifevest and swims around, playing with all the other kids' toys. Its a "Free for all" as far as the pool toys that everybody brings. We have two floatation animals and our kids usually play with some other kids sand toys and they ride our water animals!

We've met another family who have an 18 month old son who is in early intervention as well, due to not crawling by 12 months old. They love the occupational therapy they receive through Regional Center and will not be needing it anymore, now that he is walking.

Every morning, John and I do our "work" and Katie and Grammy do her work. John is building 'bridges' with blocks, working on opposites, practicing his pronounciation with flash cards, playing with puzzles, finding hidden objects in play dough, matching photos, and reading books. Katie is practicing her writing -lowercase letters--, addition, reading comprehension, opposite puzzles, and trying to master a more advanced jigsaw puzzle.

All in all, vacation is nice and relaxing. Everybody is having a blast!

Neurofeedback Study

Through Neurofeedback Centers for Success, we have arranged a barter system. My family trains for free and I create promotional videos for them. Besides John, my Granny, husband, daughter, and myself will begin brain training (and possibly my dad). Each person will be dealing with different areas, but for the most part, the goal is to become more calm, alert, and focused. Granny has restless legs syndrome and is hoping that she can go off medication once her brain learns to 'self regulate'. Every 10 sessions for people over the age of 6, they administer a test, which monitors how your brain performs under low and high demand, how it reacts/recovers when a mistake is made, and tracks progress throughout brain training. So, we are doing our own little research study for anyone interested. Every once in awhile I will report back on this site on how each person reacts and feels about "brain training".

So far, John's in home teachers have noticed better posture, the psychitrist mentioned to my mom that John seems calm while in class, he seems to fall asleep better, he is socializing with Katie better, rarely bites his shirt anymore, no self stimulating behavior, and his vocabulary has increased dramatically. Things that haven't changed: clumsiness while walking, sustaining sleep thorughout the night (off/on), still in constant motion, still has limited eye contact, resists socializing with peers, and attention span is still pretty short. John has had 35 sessions. There were about 10-15 sessions in the middle that were unproductive, due to a switch in "protocals", causing agitation and pulling off the wires. The last week of sessions have been amazing and probably John's best sessions. He has remained calm, fairly still, and rarely pulls the wires off. They were able to move him into the 'big room', as opposed to the private room since he doesn't make as much noise as he used to (he'd sing, talk, babble, etc) I would say that since John is sooo young and doesn't understand what he's doing, as well as having "busy hands", pulling off his wires, many sessions were unproductive. I would say, he's more likely at 20 good sessions, than 35.

Tonight Bill had his first session and felt that it did make him feel more relaxed, less tense, and more attentive. He was skeptical going into it (and still is), but admitted it did make him feel better. My dad went once and felt like he experienced no change in how he felt, nor did it make him sleep better that night. He also admits he's not that self aware, but didn't feel like it did anything.

Granny had her first test after completing 10 sessions and her scores went up dramatically. It showed her alertness and reaction time have improved. Retless legs still bothering her...

I will continue to post updates on this site regarding our personal testimonials.

Here is the 60 second promo I edited for them. You can see a higher quality video, by going directly to You Tube, clicking on the video, and clicking "play in high quality". My portfolio on YouTube is HERE.

Traveling with an autistic child

I came across some articles that touch upon travel with an autistic child. I thought someone might be interested. Some of this stuff does not apply to John and other stuff is right on. It is worth the read.

This article is from "smarter travel".

This one is from USA today.

Here is one from a parent on epinions.com

Here is the tsa: travelers with disabilities website with information

Here is one resource that has a ton of tips. (AutismTravel.org)

I'll end with a section from the last website I listed:

Preparing an autistic child for vacation should begin with an understanding with their core problem areas. If sensory issues are a problem, then you need to address those. For example, an amusement park visit may require headphones/earplugs for a child with audio difficulties. If you child is on the diet, then reserve a room with a refrigerator. That is simple, right?

But what about preparing your child in other ways? Perhaps a social story discussing issues that come up on the ride -- like hitting your sister or singing the Mickey Mouse theme song 91 times. Rent a video of your destination for your child to watch. Or a library book on the destination. If they use visual schedules, then prepare a visual schedule for the week of vacation.

Also think through the location. The beach is a family favorite but could be an issue for any child. The sound of the waves, feel of sand and wind, taste of the water, bright sun -- all together equals sensory overload. Maybe you put sand in a bucket and dip their feet in? Or you can buy a wave CD and play it at night for a few weeks before you leave. And if worse comes to worse, you divide and conquer. One parent takes the sibs to the beach and the other to the pool. Or you all visit the pool.

"Out of Sorts" days

John has had a day where he has just been "out of sorts" since he woke up.

Days like this include clingy behavior, accompanied by crankiness, and "oh no" quite a few times. Everything seems to set him off. He doesn't listen well and doesn't seem interested in anything. He'll ask for one thing or another and then be upset once it's given to him. He doesn't eat well and sleep doesn't seem to change his mood. "Good" moments are less frequent throughout days like this, but are present in between the whines and cries. Most of the day, he's hanging on my back, if I try to sit on the floor with him, climbing on my lap if I'm sitting in a chair, or putting his hands under my armpits and pinching, which I move and it makes him mad and irritated.

On days like this, he cries, not like a tantrum, but like he's sick or just doesn't feel well. It's days like this when you find reasons to explain away the behavior. You think that he "might be coming down with something" or "his head might hurt". You might tell someone that he seems "tired today" or simply that "he isn't happy". You find yourself thinking he needs another nap and try to lay down with him, but he cries inconsolable. Sometimes it's an angry cry, then it's a sad cry, and then it stops. You hold your breath and don't move, thinking that he might actually be falling asleep. 30 seconds go by and the crying comes back. You try to stay calm and sing songs. You tell him it's ok and continually say "shh". Then you just hold him in silence, hoping the crying stops. Sometimes, it's too much and you call in for reinforcement so you can get away from it.

Whatever the reason, these days are hard to get through. It reminds me of how it used to be, and how it still is. On days like this, it feels like a set back and you question the progress so far. When the schedule isn't busy and we aren't going from therapy session to therapy session --- when we have a full day of "doing nothing", or running errands, or hanging out, these days seem to creep in. It's hard to stay calm. It's hard to find understanding. I feel tired and need to get away. So, Daddy takes both kids outside. I'm glad I'm not alone. The support of those around you is so important when you hit days like today. It's days like this that if someone tried to tell me that nothing is wrong with John, I might throw something.

Starbucks Cake Makes Me Happy!

You may see me eating at Starbucks a little more often than I already do. This is because John has verbalized to me (without prompting) that Starbucks cake makes him happy! His class ended early and we had some time to waste between that and another appointment, so we stopped by Starbucks and I got him a Cinnamon Swirl Coffee Cake. He kept saying "starbucks cake makes" and then something that I couldn't understand. When I told him I didn't get it, he did the sign language for happy and touched his cheeks and smiled. I've told so many people (in front of him) that he did this, so now he uses it a lot! :)

I've asked him what else makes him happy (he still can't say the hard "e" sound, so it comes out "happ-n"). So far, elevators make him "happ-n" and city buses make him "happ-n".

Driving in the car is a 'talkative' experience for John now. He points out gas stations, the post office, every city bus that drives by (which if you pay attention is A LOT), school buses (which are different from city buses and John is proud -- "skool bus --dellow (yellow)"), as well as green lights and red lights, "big guck" (big truck), car (with a Boston accent), and don't forget all of the important places like Target and McDonalds. ("McDonals other way")

I can't tell you how "happ-n" it makes me to see John express himself through language. In March of this year, I would have thought it impossible to improve this much, not only his vocabulary, but his cognitive speech. His understanding that green and red lights have different meanings ("go, go, go" and "tops" -- he puts the s at the end instead of the beginning), that city buses and different from school buses, and that Starbucks cake makes him happy are just a few examples on how far we've come in such a little time.

I asked the kids where they wanted to go for lunch the other day and John said Carls Jr. (which he just learned recently was different from McDonalds) I told him "later", which right now works really good to get him to move on from something. So, today, I asked the kids where we should go to lunch and John said "Carls Jr., Des." "Des" is Yes. So, I told him we could do that today. He smiled, "carls jr. des".

Again, to anyone that is considering early intervention, or to those that know something is wrong, but are having a hard time admitting it, let me tell you that the gains are so worth it!

To look at John's face and see him not only use language to fulfill immediate needs or label an object, but to see him express feelings is worth all the hard work. Looking back to March of this year, when John could only say 2 words that were clear, and testing at a 17 month cognitive level (when he was 30 months old), I am SO grateful for the services we are receiving. The 'formula' of services that John is getting is working and I'm so grateful that "starbucks cake makes him happy"!

Occupational Therapy

It's been a crazy week, but I found some time to write. I'm going to talk more about Occupational Therapy today. I am using a handout from John's START program orientation packet as a reference.

Occupational Therapy (OT) for children is play based and goal oriented therapy designed to enable a child to do his/her job (occupation). Some of these occupations include play, being a member of a family, making friends, performing in school, completing self care activities, and reach developmental milestones.

Occupational Therapy using a Sensory Integration Framework

The tacktile, proprioceptive, and vestibular systems (discussed in previous blogs) develop and function prior to birth, and together play a part in the development of skills. We need to register, interpret, and respond to stimuli. The organization of the senses is called sensory integration. The ability to successfully meet an environmental challenge is termed adaptive response. OTSI therapy provides the child with controlled sensory input in order to facilitate a n increasingly complex ability to create an adaptive response.

5 senses - touch, taste, smell, sight, & sound
2 others - movement and body position

Using OTSI (Occupational Therapy with a Sensory Integration framework), expected outcomes:
- increase frequency & duration of adaptive responses
- development of more complex adaptive responses
- increase self-confidence & self-esteem
- Improvement of gross and fine motor skills
-improvement in daily living and personal-social skills
-improvement in cognitive, language and academic performance

Psychologist Meeting

I met a psychologist today at Casa Colina that will work with us every other week. Today we talked about John, his progress, and his struggles. She reminded me that as we see progress, we will also see him enter a new developmental level, which could include behavior changes and struggles. She stressed that although these struggles could be difficult, it is a good thing because it is a sign that he is developing. He needs to have time to develop the understanding at each level of development. He has to go through each stage, both strengths and struggles. She said it's important to not always worry about the big picture, but to also take in each step, and rejoice with each accomplishment, even if it brings a new set of problems & struggles (because most likely, it will).

This and that...

I found a website that carries puzzles for ages 2-5 that are inexpensive and are nice "in between" puzzles moving from single piece ones. The website is here.

Last day of swim lessons for the kids was today. Katie is jumping off the side and swimming to the edge on her own now. She has learned gliding, back gliding, free style, and back stroke.

John is getting used to being in the water, blowing bubbles, kicking, and moving his arms. He enjoys water songs and splashing, as well as running around the spa, jumping from step to step.

Speech therapy is becoming more demanding and John doesn't want to pay attention. Eye contact is still very poor and he completely avoids any contact when he doesn't want to "say his words". He is learning about "quiet hands" and sitting still to listen to the directions. He is still impulsive and doesn't really pay attention to the teacher's direction. He almost anticipates what she is going to ask him to do and just doesn't sit still long enough to focus on what is being asked.

Developmentally, John has hit a different stage of separation anxiety, asserting independence, and tantrums, which is great in one sense and also exhausting in another.

As speech continues to increase and become more understandable, I'm beginning to see things that I didn't notice before, like the extent of his social delay. Prior to language, it was difficult to sense his social awareness. As it develops, it is becoming more clear how socially behind John is. Staying in a group, following directions, interactive play with others, and following a conversation is very hard for John. If he gets fixated on a particular thought, it is hard for him to move on, unless you acknowledge the thought and talk him through it. Although he sometimes can move on, it is becoming more obvious that he returns back to that same idea/thought/word and doesn't always respond to what is being said around him.

For example, in the office tonight, Katie and John were laughing about a joke Katie had made earlier by pretending to type on the keyboard and say "elmomovie.com" (which doesn't exist, but Katie thought it was funny to add the .com and got John laughing and saying it as well). This evening they were doing it again for Bill. Katie started to do something else and John kept saying it. We acknowledged it a few times and Bill asked John what he had for lunch. John ignored him, keeping the joke going over and over. Bill then asked John where daddy was and John didn't pay attention. I stopped John and asked him where daddy was and he said he wanted a bath. I told John to tell Daddy where he went for lunch and John said "elmomovie.com".

Another example today was at Speech class. I watch through a window while Tonyia works with John. When it's over, they come out and we talk in the hallway. John was upset that the door wasn't closed. Tonyia told John it was ok. He started to flip out and kept asking to close the door. I picked him up and told him to tell Tonyia goodbye. He said goodbye. Tonyia and I had a few other things to say and he started crying about the door being open.

These are just small things, but they are signs of social interaction. We need to keep an eye on it and try to talk to John in conversation now that his speech is improving so much. He is immature and delayed, and is just starting to use speech, but we need to recognize these interactions so we can help him.

"My Gym" Birthday Party

My kids attended a "My Gym" Birthday party today. Both kids enjoyed it and had a great time. It was fun for the whole family and a cute idea for a birthday party. They have weekly classes, Parents/Kids nights out (where they babysit while parents go out to dinner and kids play in the gym), lunch bunch (they serve lunch and kids can play in the gym while parents run errands), and gym free time (for enrolled students to play around in the gym).

They had structured group activities, as well as lots of Free Time for the kids to run around the gym and play.

The Gym had trampolines, balance beams, monkey bars, a ball pit, trapeze bars, rings, slides, climbing ladders, a zip line, parallel bars, toys, hula hoops, and tons of things to tumble in and on.

Both kids enjoyed climbing on everything, jumping, hanging, and swinging. John got a kick out of the trampoline and hanging from the money bars. He'd play along for a little bit in group activity, get bored, and wander off. Katie enjoyed group activities, trying to flip on the rings, and imitating the older kids. Bill, the other parents, and I could follow the kids around the gym or sit in the observation room. Bill and I took turns taking pictures and following John around.

They also served pizza, cake, and had a pinata. The party lasted 2.5 hours and the kids played most of the time. It wore them out and they are sleeping quite well right now.

Where Our Minds Go

It's amazing what your brain does once you learn your child has a developmental delay, a disability, or behavior issues. I was talking to another mom whose child was not put on the autistic spectrum, but had other developmental delays. She told me she called her son's therapist panicked one day because her son lined up all the shoes in the closet in a straight line. The therapist laughed and told her to relax. There is no appropriate way to "play" with shoes, so this was not a sign of anything wrong. (many kids with Autism do not know how to appropriately play with certain toys or appropriately use everyday objects). Although autism was ruled out for her son, this mother began looking into everything her child did.

Well, it happened with me today. I took John to the bathroom at a local restaurant. He stopped upon walking in the door, stared toward the wall, and began "flapping" his left arm. He then started giggling. I began thinking "oh no, he's flapping his arms. He has never done that before. why is it starting?"... (many Autistic children engage in self stimulating behavior, including arm flapping). Then, I looked again and noticed that he was looking at the automatic paper towel dispenser. He was "waving" his arm so that it would dispense the paper towel. I can relax now! ;)

Seriously, it's amazing how many things you look at and question, "is it the autism" or how many people just assume "it's the autism" and overlook what is really going on. It's important to remember that John is a little kid, regardless of Autism.

Obstacle Course

Tonight before bath time, we had a little "occupational therapy" of our own.

First we created an obstacle course in the living room.

Puzzle pieces were laid out on the coffee table beside the couch. Each kid chose a puzzle piece, bounced off the couch, and into the "mud" (pillow crash pad on the floor). They had to crawl through the "mud", climb up the "bridge" (ottoman), jump off the bridge, run to the "mountain" (the chaise lounge), climb the "mountain", and go over the top of the "mountain", feet first, landing on the ground, where the puzzle was hiding. They had to place their puzzle piece into the puzzle and make their way back to get another piece.

The second obstacle course was in our family room. Inside the bounce house, we placed a jar of vehicles (planes, trains, cars, buses, etc). Each kid chose one vehicle and held it in their hand. They jumped across the bounce house, landing into the ball pit, making sure they held onto the (rubber) vehicle. Hidden in the ball pit was a mini-basketball. They had to find it, keeping hold to the vehicle. Then, the basketball needed to be thrown into a basket outside of the ball pit. They climbed out, and walked across the foot path (2 small kid size ottmans) and jump off onto the ground, where on the other side was a tub of water. They dropped their vehicles into the water and then started over.

Then, it was bath time. The kids finger painted with "soap paint" during bath time. After bath and brushing teeth, we had circle time with our new puppet friends. I found some great puppets (folkmannis puppets) at HodgePodge Games. I got a cute little lamb that Katie fell in love with for "Mary Had a Little Lamb". I got an Itsy Bitsy Spider finger puppet, a large Duck for "3 Little Ducks", and an awesome turtle for "Tim the turtle". The kids love the puppets and love learning through song.

The Development of a Pre-Schooler

I was given a handout on the development of a pre-schooler from Casa Colina today that I thought was helpful and thought I'd share. It is written by Beth Witt, M.A.

The Two-Year Old

SOCIAL SELF-HELP
needs consistent discipline
allowed a degree of independence
moving from parallel to cooperative play
Curious and Anxious to explore
toilet trained or scheduled
partially undress self
feeds self with spoon

GROSS MOTOR
Can walk, run, and jump smoothly
likes to roll, bounce, and catch a ball
Balance improving
likes to pull and ride toy vehicles

FINE MOTOR
Likes to stack blocks
manipulate and makes noises with toy cars, animals, and dolls
Fits things together (cups, pots and lids, puzzles)

CONCEPTUAL DEVELOPMENT
Knows 4-8 body parts
Matches objects
Nests things by size
answers what, who, where questions by pointing or other actions

The Three Year-OLD

SOCIAL SELF HELP
more responsive to authority
learning please, thank you, my turn
Cooperative play/Fantasy play
cares about approval of others
asks lots of questions
responsible for dressing including some fastenings
help with washing and clean up tasks

GROSS MOTOR
stand on either foot briefly
begins to hop
can catch and throw ball
pedals a tricycle

FINE MOTOR
imitates a circle and a cross with a pencil
likes to color
can hold paper and scissors and cut forward on line
can work simple inset puzzles

CONCEPTUAL
knows 8-15 body parts
names actions, identify objects by function, and answers situational questions
responds to 3-6 positions words (on, in, out, up, down, over, under)
match by color
knows big and little

The Four-Year Old

SOCIAL SELF HELP
wants to help and be recognized for it
seeks adult and peer approval
may share toys to a small degree
can express basic feelings about self
can dress except for difficult fastenings
learns table manners

GROSS MOTOR
likes to climb, hop, skip, and dance
responds to a sequence of motor directions
can play simple ball games

FINE MOTOR
can imitate a square and rectangle
beginning to color within lines
traces lines
can cut out simple shapes with scissors
imitates block patterns

CONCEPTUAL DEVELOPMENT
can answer some why and how questions
aware of time and weather
sort by shape
learning position, quantity, and sensory concepts
more aware of community people and places


The Five Year Old

SOCIAL SELF HELP
respects authority
more independent
interest in group activities
loves games
independent dresser
semi-independent at grooming tasks
beginning to use a knife

GROSS MOTOR
can move in many ways
quickly follows directions
strong and confident
may ride a bicycle with training wheels

FINE MOTOR
trace name and print several letters
draws simple person with 3-4 body parts
can copy 2 shapes
colors neatly within lines
works part-to-whole puzzles

CONCEPTUAL
learning time and weather concepts
same and different
categorizing
sort by size
beginning to order and sequence events
answer questions about past, present and future
answer questions about community
compare by degree

Tantrums

John used to cry for long periods of time for no reason. I remember days where I would call my mom everyday at 4:00 in tears because John had been crying for so long. I remember days when we lived at my parents house and we would put John down for a nap and he'd cry for 45 minutes before he'd finally settle down. Since beginning early intervention, those episodes rarely happen.

But, over the last 2 weeks and specifically, the last 3 days, tantrums have taken over. These tantrums are different from those days I described above. These have been the kind of tantrums that have a known cause ---- he doesn't want to get out of the spa, he doesn't want to get out of the car, he doesn't want to get in the car, etc. He screams, cries, kicks, throws himself on the ground, bangs his hands on the door, etc. It's a fit of rage. We've had about 4 of them since yesterday afternoon and quite frankly, I am tired of it! It makes me realize that we haven't had days like this in a long time. It reminds me of what we started at.

It makes me question: are these 2-year old boy tantrums (hence the name "terrible twos"), is this a sign that the neurofeedback is not working, is this the 'autistic behavior, etc.

Whatever it is makes for a tired and worn out mommy!