John's Services Updated

I have lots of news today and it may take more than one topic to cover all the news on John. I'll start with the IEP.

Today, we had John's IEP (Individualized Educational Plan) with the school district. It was a bittersweet moment as we learned that John no longer will qualify for services. This is a very good thing because it means that the progress John has made since May has been so overwhelming that he does not need Special Education. The school district determined through their assessments that, although John has showed developmental delays in the past, his scores in all areas of development fall within the average range. He doesn't show a need for continued service, whether it be special ed pre-school, speech, or occupational therapy.

Hopefully, the early intervention will serve as a deep enough foundation for John to integrate into regular pre-school and naturally develop alongside other children/peers. I am disappointed that occupational therapy and speech could not be continued. I learned today that to qualify for occupational therapy, he would have had to meet the requirement for special education. Then, it would be determined if it was necessary for OT. However, speech is a little bit different. It is a standalone service, meaning that if he meets certain criteria, he could qualify for speech, even if he did not for special education preschool.

Hopefully, John will continue to develop his attention so he can engage in a classroom setting without too much re-direction. As far as skill levels, he has caught up in every catergory, which I will get into in the next blog topic with regards to his latest Casa Colina evaluation. His largest problem area that his current educators see is his willingness to participate, along with his attention and engagement with little re-direction.

Bad Days

Wow! I can't believe how long since I've written on here. Therapy appointments, a new Facebook addiction, and the holiday season have kept me from updating this page.

I have been concentrating on John's progress and the success's we have had since beginning early intervention. ( see 2 posts below for John's progress under "Neurofeedback Testimonial" ) Today, I want to take the time to talk about the struggles we have in raising a child with Autism. Since beginning early intervention, we have had extreme highs and dramatic lows.

A few days ago John had 3 meltdowns in the afternoon. These are not temper tantrums, but emotional meltdowns. Many times with autistic children, if anything is slightly 'off', if they feel sick, or they are having trouble figuring out their emotional state, they have these meltdowns.

For John, it began at naptime the other day. It's the kind of meltdown where the tears won't stop, you can't console the child, he can get hysterical, the cries turn to screams, and there is no apparent reason why he is upset. He appears uncomfortable, constantly moving and wriggling. Holding him is almost impossible because he doesn't want to be comforted. Talking to him makes the screams get louder. Rocking him makes him irritable. Time only makes the rage worse. As a parent, you go through a wide range of emotions during the meltdown. It starts with compassion and a sense of wanting to calm him down. Frustration creeps in as the meltdown continues. As his anger builds and you try everything to calm him down, your anger builds, as you try to remind yourself that getting upset is not going to help this situation. At some point, I begin to wonder what kind of impact episodes like this has on Katie, who is laying in her bed, one bedroom away, trying to take her nap. The next emotion you feel is failure and somtimes you begin crying with him, wondering why he has to be this way.

A few days ago, the first meltdown ended 40 minutes later when he became so tired and just fell asleep. He slept for an hour, while I re-charged for round two. The second he woke up, he picked up from where he left off. This time I couldn't stick with it. I called my mom, frustrated and felt like I just didn't know what to do. I had him on the lounge chair with a blanket, with his shirt off. He ripped it off at some point and wouldn't let me put another one on. I think restraining him would have been the only way to get the shirt on, but I had no energy for that battle and decided that if he wanted his shirt off, he knew better than me on this one. He wanted to bury his head in my shoulder and cry. He kept sobbing and wanted to pinch me under the armpits. His hand kept making its way into my shirt and I kept taking it out, which infuriated him, but I wasn't going to let him hurt me. I kept thinking to myself that this kid is only 3 years old and I'm the adult. My mom stopped by and when the door opened, he stopped crying and just looked at her. She walked in and said one word and the crying continued. She offered to hold him and he screamed "mama" and wouldn't let go of me. After another 15 minutes, he fell asleep on lap while my mom and I were talking. She left and I let him sleep on me for a half an hour and then I rolled him onto the couch. He stayed there for 2 hours. He never sleeps that long in the daytime, but he wore himself out.

When he woke up, he wasn't very happy and cried a little bit more. This time I had reinforcement --- Bill had come home from work. He responds better to Bill at times --- I think John gives me the worst of it. He wouldn't eat dinner, but we had to go out. Putting him in the car and eventually stopping at McDonalds changed his mood and he slept well that night.

Episodes like this are becoming a lot less frequent. In fact, we haven't had one of these in a very long time. But, it reminds me of where we came from. As a baby and up until last year, John had these episodes almost every day at 3 or 4 o'clock. I never knew what was wrong. I blamed milk, gas, his stomach, maybe he was sick, etc., but sometimes I don't even think these kids know what is wrong. It reminds me of where we've been and although we've made tons of progress, it also reminds me of what we are dealing with. Prayer, tears, friends, family, Bill's support, and my mother are getting me through this. Now, my prayer is strength to deal with the third child that is on it's way....

Websties on Autism

I thought I'd spend today's topic on places you can visit online for more information on Autism. This are provided for research purposes only and are not an endorsement for the information provided within the pages or the organizations themselves.

Clicking on the name will take you to the website.

Autism Speaks
Autism Society of America
Generation Rescue (Jenny McCarthy)
National Autism Association
TACA - Talk About Curing Autism
Unlocking Autism
Autism Research Institute

Redbook Articles

Redbook published two artices on Autism. Click on title to read.

Autism: "There's No Such Thing as Too Much Hope"
Autism Activist Moms

Neurofeedback Testimonial

I recently submitted this testimonial to Neurofeedback Centers for Success.

My husband and I brought our 2-year old autistic son to Centers for Success with both intrigue and skepticism. When we first began, John had been through only 2 months of traditional early intervention therapies, such as Speech, Occupational Sensory, some in-home play, and an Early Start Preschool. He had been significantly developmentally delayed in all areas. His speech (at 30 months old), was tested like that of a 6-9 month old. His cognitive skills tested at a 10-17 month level. 6 months ago (at two-and-a half years old), John had no attention span, could not sit still, jumped form one activity to another, was in constant motion, grinded his teeth, chewed on his shirt collars, did not sleep through the night, had eating issues, had little-to-none imaginary play skills, could not ride a tricycle, and did not socialize with other children. When he was tested, they couldn’t complete many sections because he wouldn’t focus for them, wouldn’t respond to his name, wouldn’t point to a single object when asked, and was constantly running around the room, flipping on and off the light.

To date, John has had 50 sessions of Neurofeedback over 4 months time, and we are still planning on more. He rapidly progressed in his developmental skills, including bringing his speech to a 31-month level and his cognitive to 33 months (he is currently 36 months old). Among his skills, include riding a tricycle, which has become a favorite outside activity now. His imaginary play has grown by incredible strides, moving from cause-and-effect toys to playing with cars and blocks, as well as playing kitchen, grocery store, and even ‘brain school’(neurofeedback). He uses Play Dough as the “sticky stuff”, grabs headphones, and tells me he needs a movie! His retention has increased, which he can show us through the speech skills he has gained. He can now sit still through the reading of a book, which was something that he had never done before. We used to try just looking at pictures and ignoring the words, but he still couldn’t do that. Now, he’s interested in listening to someone read and can sit in a ‘big’ chair, without having to strap him in a high chair or booster. He has enough attention to sit and complete tasks, such as puzzles or stringing beads in patterns.

Socially, John has grown in his interaction with his 4-year-old sister, engaging in play and laughing at jokes between the two of them. He initiates hugs for bedtime, holds her hand, and plays prince and princess with her. He can play on his own, entertaining himself with age appropriate toys. With other children, John will say hello and goodbye, but his play is still more parallel in nature and not too much of engagement.

Behaviorally, we have watched John grow through different developmental stages. Prior to any early intervention, John was often frustrated due to his lack of communication and ability to do things for himself. He would often act out by throwing things or cry inconsolably. He’d cry until he fell asleep, often 30-45 minutes. As he became calmer and his skill levels increased, we watched the behavior change. He had more control. We then entered a stage of transitional tantrums, which only lasted about 1-2 weeks, but he’d cry as activities would end. Centers for Success changed some protocols and the calmness then took over, and the tantrums ended. We went on a vacation that included a 5-hour plane flight. John had no problems sitting in his airplane seat, happy and calm, for the entire trip (both on the way there and on the way home). We are currently in a new behavioral phase, which includes tantrums because John doesn’t get his way. This is different from the transition tantrums. These are in direct result of not getting what he wants and are in complete protest. He’s learning that he can communicate his wants to us, and protesting when we don’t oblige.

John’s diagnosis has changed from an “autistic disorder” to “PDD-NOS”, (Pervasive Developmental Delay, “not otherwise specified”) meaning there are signs of autism, but not enough for a Classic Autism or Asperger’s diagnosis. John has made HUGE progress since his first examination 6 months ago and beginning Neurofeedback 4 months ago. John still has a way to go, but life today is so different than it was back then. It’s more manageable from a parental standpoint and less frustrating from John’s standpoint. We are continuing with all of the therapy because it’s all working together. Neurofeedack has made it possible for John to be calm and attentive to learn the skills to catch up to his peers. He’s also learning to efficiently use his brain, increasing his maximum potential, during this time of early intervention. The rate at which he’s developing is incredible. Socially, John has grown in his relationship with his sister and I am hoping to report that this carries over into his relationship with other children. SO, until next time, this is “to be continued”….

Understanding Development

I think one of the most important things parents of developmentally delayed kids need to remember is that the brain, along with the child, still needs to go through each stage of development. A child will not "skip" a stage through early childhood development as new skills emerge. The child, as well as the brain, needs to learn through the "normal" phases of development, so as your child grows in his development, you'll see new behaviors emerge that he/she may have never shown. This isn't a regression and yet, that may be how it feels. It is something you should rejoice in because he/she has hit a new developmental milestone. I will stress that it oftentimes doesn't feel that way, and does make life a bit harder, but there are certain behaviors that are normal in early childhood development.

I have recently discovered what a "terrible two" really is. John may have just turned 3, but the terrible two's are here in full force. I may have thought they were here earlier, but they were only a glimpse of what was to come! These new tantrums include protesting when Bill or I do not oblige in the wants and needs that John communicates to us. These are different than the days of transitional tantrums or the even older days of inconsolable crying. These are tantrums that are a direct result of John not getting his way. They include yelling, running, throwing, kicking, and pulling hair. Discipline ends the tantrums. Discipline makes him mad, but discipline works with these tantrums.

As I said before, we as parents should rejoice in the fact that this normal developmental phase is here. Instead of pulling our own hair out, we should jump up and down that are child is developing. My prayer is that the phase doesn't last long and that God gives me the strength to keep my cool because sometimes I would like to run around the house, scream, throw myself on the floor, pull someone's hair, or even "ring their neck". There are times when I feel like I can't take it anymore, but the day ends and the next day begins. God won't give us what we can't handle. Our reaction to what we are given is what will make us strong or weak in our handling. But, we can handle it. But, we may have to constantly remind ourselves that we CAN handle it.

60 Minutes: Brain Power

Book Report: Mother Warriors

Writing a blog in 2008 about Autism has to include Jenny McCarthy. Jenny McCarthy has brought the idea that bio-medical treatment and diet can lead to recovery in kids with Autism and started a foundation called Generation Rescue. I have her read her most recent book, Mother Warriors, which is about the mothers (and fathers) behind children diagnosed with Autism, and how they fight the disorder,mostly through nontraditional methods, helping kids with autism recover.

The book is worth the read if you are looking for inspirational testimonials from parents who have fought the Autism battle, using DAN! (Defeat Autism Now!) doctors, bio-medical treatments, diet, etc. Each chapter discusses in detail, personal stories in how a family found healing for their child with Autism.

It discusses the two controversies surrounding Autism:
1. causes
2. whether a child can recover

One thing that seems to be a recurring theme throughout all of the personal testimonials is that "clearing up the gut clears the brain". The DAN! doctors do a series of tests on these children and what is revealed are high levels of yeast, bloated guts, and a variety of other factors that lead to the conclusion that the child's diet needs to be adjusted. What seems to result is better sleep and a clearer mind.

There were many inspirational quotes from the book and I will share a few here:

When Jenny McCarthy's son was able to talk and communicate to his mom, he shared with her how he used to not be able to remember his words, similar to that of Dory, from Disney's Finding Nemo movie. She then says this:

"All that time my son had been completely aware of his inability to get his words out. It was at that moment that I realized that even though our children look completely zoned out, there is actually a spirit inside them that is full of life and love that needs the same talking to as a typical, healthy child. If the child could speak, he or she would say, 'Just because I sopped talking Mom, doesn't mean you should stop. Keep talking to me. I like hearing your voice'".

One mother says: "There is nothing more hopeless than when doctors tell you they can't fix the brain because they can't get to it...science says that this is an autoimmune disease and manifests behaviorally as autism. If you treat it as an autoimmune disease or as a neuroimmune disease, then kids will get better."

Another says: "Tylenol lowers glutathione (the body's natural antioxident)" She discusses how giving Tylenol to your children for the pain right before they get their vaccinations is lowering their bodies natural defenses to fight the toxins entering their body. Some parents give their children supplements of glutathione to restore the levels in their body to help naturally detoxify the metals that are present in their systems.

And I'll end tonight's blog with this one: " Miracles can happen, faith can move mountains, and doctors need to learn about a medicine called hope".

Newsweek Autistic Traits in Adults Test

Awhile back Newsweek had this test/questionnaire to measure autistic traits in adults. It's online and you can take test here.

Newsweek article on Autism

Today, I came across yesterdays Newsweek. It's about recognizing early signs of Autism, especially with the way children play with toys as early as 12 months old.

Here is one paragraph:

"The American Academy of Pediatrics recommends that all infants be screened for autism twice before they are 2. Pediatricians look for language delays and lack of interest in people, such as not responding to their name and failing to make eye contact. But these can be present even when autism is not. The latest findings are not perfect either, but they are something parents can watch for every day rather than relying on—and waiting for—a short visit to the doctor. “There is an urgent need to develop measures that can pick up early signs of autism, signs present before 24 months,” Ozonoff says. “The finding that the unusual use of toys is also present early in life means that this behavior could easily be added to a parent check-list.”"

Here is the article:

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!

A little this...a little that

Catching up from the weekend....
Katie has developed into a wonderful swimmer over the last 4 days! Once she felt in control under the water, she has excelled rapidly. She glides both on her stomach and her back across the pool. She swims underwater and comes up for breaths. She is learning how to use her arms to stroke. She jumps in without someone catching her and actually loves it now.

John's last day of Early Start is tomorrow! He will move into the START program next week.

On Friday, John has an evaluation with Foothill Presbyterian Hospital for Occupational Therapy/Sensory Integration (finally!!!)

Now for today...

John had speech today, but instead, they began his START evaluation. Step One is to evaluate his play to see at what level he is "playing' at. The idea here is that autistic children tend to take everyday objects and use them in different ways, instead of the intended use.

So, Tonyia gave John a baby doll, hair brush, bar of soap, bottle, and toothbrush. He started by brushing her teeth. Although, at first, he picked up the bottle and the toothbrush, which looked odd, but then he used the bottle as the toothpaste and then proceeded to brush her teeth. He then grabbed the brush and brushed her hair. Tonyia asked John to give her a bath and he used the soap on her legs. She then took off the babies clothes and put foam soap on the baby's tummy and John grabbed a tissue and cleaned the baby. Tonyia then assisted John in dressing the baby and John brushed her hair again, pretty hard. Tonyia told John the baby was crying and gave him the tissue to wipe her eyes. John wiped away the tears and picked up a cup out of Tonyia's bin. He grabbed the bottle and "poured" something in the cup and took a drink himself and then gave some to the baby.

Tonyia set up a house with a bed, sofa, TV with DVD player, table, chairs, and a slide with a ladder. She then gave John a boy, girl, and later, a mom. He laid the mom on the ground. He had the girl sit on the couch. He then took the TV into his hands and played with it for a long time... there was a "pretend" DVD that went in and out of a hole in the TV and he kept putting it in. Tonyia eventually took it away from him. He then took the boy and had him climb the stairs and slide down the slide. Then he asked for bubbles.

He played with cars, play dough, and bubbles and it was time to go home.

John had another session of Neurofeedback today. We are on session number 20. The first 20 minutes is spent on the part of the brain that controls sleep and impulse control. John was so quiet and calm. The next 20 minutes made John a little agitated, as it has the last few sessions. They added an element that helps with motivation. Today, we decided that it may be too much for John. We are going to eliminate that protocol from the training and add 10 minutes to each of the other protocols. The last protocol is training the part of the brain that deals with social/emotional responses.

Things I've noticed since beginning Neurofeedback:

• biting of skin stopped
  
• chewing of shirt stopped
• doesn't drag his toes anymore while walking
• Achieving goals rapidly at Casa Colina
• Speech improving
  
• Falls asleep easier
  

Now, I'm not saying Neurofeedback alone has contributed to these things. John is working hard and there are a lot of PEOPLE helping John, but I am beginning to believe that Neurofeedback is enabling him to be present for learning and helping with behavior. The goal of Neurofeedback is to calm the brain down enough to teach it how to self-regulate itself. Through brain self regulation, the nervous system no longer feels under threat. The body is able to think beyond itself and begin to "take the blinders off", seeing the world around them. When we feel under threat, we naturally get "tunnel vision". When our brains cannot self regulate, we will operate as if we are "under attack", manifesting itself in ADD, ADHD, migraine headaches, some Autistic behavior, sensory issues, pain in the body, etc. Through self-regulation, the brain is able to calm itself and the outward symptoms disappear.

Opening our eyes

Katie discovered opening her eyes in the water yesterday right before swim lessons. While John had his lesson, Katie and I went into the spa to "practice". She wouldn't push off the side, so I got an idea to have her walk underwater from one side to the other. She thought this was a good idea. She held my hand and walked, holding her breath and going under. I had read in the sensory integration book that some kids need to feel "grounded" -- often sitting with one foot on the ground or needing a stool when on the toilet. I thought this philosophy may help Kate in the pool since she seems so scared if she is not holding on to someone. By walking across the spa underwater, she was able to feel her body and where it was going, making her feel in control. She kept doing it, and opened her eyes one of the times. She came up so excited! "I saw your bathing suit underwater Mommy!" She wanted to keep doing it. She even walked without holding my hands once she could see and could keep an eye on where my hands were if she needed them. The "accidental" opening of her eyes has progressed her swimming lessons a ton. What a difference a day makes!

And what a lesson to be learned -- open your eyes and try to touch the ground, and if nothing else, remember that tomorrow is another day.

Getting even busier

I always thought I was busy. I didn't know how busy life could get. Well, this week, it's even busier. To our already full schedule, we have added swim lessons for both Katie and John. We have a family vacation planned for Hawaii in the fall, so late summer lessons were always on my 'to do' list.

Katie has never had any formal swim lessons, so we have a lot to make up for. She loves the water if someone is holding her or catching her jump in, but she is petrified to swim by herself. She clutches with all her might to anyone near her that tries to have her swim or stroke alone. If you let go of her and tell her to kick to the side, she just goes limp and sinks. She holds her breath, but then panics after 2 seconds.

John loves the water. He kicks pretty good and can go under holding his breath. He swallows a lot of water, but it's while he is on the surface that he allows the water to go in his mouth. He loves blowing bubbles and playing on the steps.

Hopefully, by our trip, both kids can swim to the edge of the pool on their own.

Until then, our schedule will just be jam packed -- 2 days of early start preschool for John, 3 days of preschool for Kate, 3 days of in-home therapy for John, 5 days of Neurofeedback, 2 days of speech, and 5 days of swim lessons for both. Vacation will feel good when it comes!

Breaking the Rules

For the "active" child who needs physical activity before he/she can settle down to work, consider breaking the rules a bit!

With supervision, encourage pillow fights, jumping on the bed, and making crash pads! In our living room, we take all the pillows off the couch and make a semi-circle from the edge of the couch. Each kid (and adults) collect the pillows from the bedrooms and bring them to the living room to fill the crash pad. First, we lay down the decorative pillows to make a base. Then, pile on top all of the soft pillows from everybody's bed. Katie, John, (and Daddy) enjoy bouncing on the springs of the couch and landing in the crash pad. Sometimes they jump off the ottoman like the Olympic divers and other times, the couch works good. Katie does running starts from the other side and does somersault flips into the pillows. It works as a great release for all of the extra energy that needs to escape!

Our family room has also turned into a gym itself! We have a mini-bounce house and large ball pit. The kids enjoy bouncing and rolling around in the bounce house, as well as flipping, diving, jumping, and rolling into the ball pit. John hides toys at the bottom of the balls and goes looking for them. Different textured balls are also good to hide so he has to feel for it.

Everything can be put away if we are having company, but for the most part, our house is for the kids. Bill gets into the ball pit with them. Most ball pits you can buy are a bit too small, so we just bought a blow-up swimming pool and a bunch (750) plastic balls from Toys 'R Us. It's actually considered great therapy for the sensory child to play in the ball pit.

Even if a child does not have sensory integration issues, what child wouldn't love to jump on the bed, dive off the couch into a mound of pillows, have a bounce house in the family room, and flip into a ball pit? It's fun letting them be kids.

Documenting John's week: Entry 2

I documented John's development 2 weeks ago. I thought it was time to write an entry on changes we've seen since the last documentation.

He has been riding the tricycle at school -- first with help from me (holding his feet on and physically moving each leg to circle he pedals) and now, today, a little bit on his own. (still with re-direction, but he's keeping his feet on the pedals and beginning to push on his own)

He seems to no longer chew on his shirt collars as much as he did before. For about a week, he stopped doing it. Yesterday, I had to remind him to take it out of his mouth, but this was a huge preoccupation before.

John has had 15 sessions of Neurofeedback and fell asleep during Saturday's session. They say that is 'good' because it is training him to be relaxed and if he falls asleep, the training teaches him what it should feel like to be in a deep sleep. He woke up very alert and since then, has fallen asleep easily the 2 nights after it. Today's session was hard because he wanted to keep pulling off the EEG wires.

John worked with Angie, a different speech therapist today. She was good with him and wouldn't let him get away with sloppy speech. He zoned out a lot, didn't want to stay in his chair, and wasn't focused for lengthy periods, but she demanded a lot out of him and it was good for him.

John started swim lessons today. He'll just go today and Friday because of our schedule, but Katie is going every day. It's private lessons in my mom's pool from a swim teacher at the local pool.

Today, there was a summer camp going on outside on the playground at school. They were singing the hokey pokey and John wanted to participate, so he walked up to them and stood in the circle and played along. His speech teacher was helping to lead the group and she couldn't believe how he interacted.

John is becoming more verbal in class, but he is not singing the songs with everyone in class like he does at home. Row Row Your Boat, which involves holding another child's hands and looking at them, presents a challenge. He selects certain phrases of each song that he'll do and then he stares off for the rest of it. He likes it when it's his turn and he patiently waits while other kids get their turn. He's good at taking turns, passing to the other kids, and saying "my turn".

Overall, John's frustration level has significantly improved. Everything used to set him off, but now, he is able to problem solve better or ask for "help". His first week of school showed his teachers his frustration and all of them have commented on how well he adjusted and how quickly his frustration seemed to go away. When he is tired or hungry, however, he can be very aggressive.

Now that language is emerging, we have gained a whole new set of behavior. He has learned the word "NO". He never had it before and now, it seems like that's all I get. He's learning the independent side of communicating and not enjoying when he can't get what he wants.

He is noticing the world around him more and it has made him a lot more clingy. He is starting a stage he never went through as an infant -- separation anxiety. He always preferred me to others, but there never was a 'fear' of me leaving. He always insisted upon walking, now he would rather be carried. This is something that from the outside that may not look much different, but there is a different motivation in clinging to me than before. I can't explain it well, but it seems like he is starting to sense the danger that exists when separated from me that he never had before (like running in the street, not holding my hand in a parking lot, leaving him to run an errand).

His posture seems to be improving. He wants to be a big boy these days and prefers a booster seat over the high chair. He is less clumsy and walks with less stumbles.

His imaginary play is developing. Last Wednesday, in class, he picked up a baby doll and told me he wanted to go outside and get the shopping cart. We went and got the 'play' shopping cart and he put the baby in the basket and told me 'buy apple bah' and he pretended to take the baby shopping. The other day, my mom and I had the blocks and a car out and he moved a block over and told us it was John's school and he drove the car to John's school.

Things John is struggling with:

• opening the scissors (he can cut by closing, but opening back up is hard)
• doesn't always react to being in trouble - he sometimes seems like he isn't reading the emotion behind the voice, especially me;
  
• doesn't understand certain behaviors & actions are wrong - he's played in his poop twice this week - doesn't seemed phased when scolded - almost excited he gets to play in water to get clean
  
• Interacting with other kids (row row your boat) or initiating play
• the hard e sound
• the concept of 2
• staying attentive for 3-5 minutes for a story or activity
• singing in a group
• riding the tricycle without re-direction
• jumping in a direction
  

Setting the Goals: Advance I Can

In my last blog, I talked about John's goals at Casa Colina. Today, I am going to show you the goals set up through the in-home program, Advance I CAN.

John currently receives 5 hours a week in the home through the I CAN program. The ADVANCE I can program is a home-based early intervention program that serves children birth to three years who demonstrate behaviors or concerns relating and communicating OR who have a diagnosis of autism spectrum disorder. They have a play-based therapy program that includes floortime teaching approaches and have individualized plans. Parents and families are encouraged to participate in the sessions at home to maximize the development of the toddler.

These goals were set about 1 month after the Casa Colina goals were set, so you will see the growth he had made just by the difference in the goals, as well as the crossover in certain areas that were seen.

You will also see the scattered skills he has, where he may have a 12 month old skill goal and a 30 month skill goal in the same category because he has some very advanced skills, but is missing some basic skills---especially with language.

Because of his age, once language has appeared, he has excelled fast through the age range goals. It has sort of shown us that he was talking before, as we thought, but was unable to move his mouth correctly to make the sounds. With speech therapy, he quickly learned many of the techniques of speech and his words just got clearer. Because of this, we couldn't say one way or another whether he was using two or three word phrases or if he knew who people were by name, or if he used pronouns, etc. because everything he said was unclear. Now that they are becoming more intelligible, we are able to say for certain he can and does understand, knows object names, uses some pronouns, etc. So, his goals, which originally started at an 11 month skill level have jumped dramatically over the last 2-3 months.

Again, John is currently 33 months old

COGNITIVE GOALS

1. John will listen to stories for 5 minutes (27-30 month skill)
2. John will demonstrate an understanding for action verbs (by doing them on request or by pointing to pictures describing action verbs) (25-30 month skill)
3. , John will compete a puzzle of 3-4 related pieces (30-36 month skill)

LANGUAGE GOALS
1. John will spontaneously say "dada" or "mama" specifically (11-14 month)

• John does this now and I would say has met this goal

2. John will spontaneously use intelligible two-word sentences (20-24 month skill)

• John is doing this and 3-4 word phrases, but getting them clearer and even more intelligible is the goal; I understand him about 80% of the time, but most people understand him about 30-40% of the time. Increasing the pronunciation is key.
  

3. John will give full name on request (both first and last) (30-33 month skill)

• He usually says "Ja" for "John" and "ho" for "Hoge" , so we are slowly getting "Ja Ho" :)

GROSS MOTOR GOALS

1. John will throw a small ball into a box while standing a distance (18-20 month skill)

• John can do this with prompting, but he'd rather dunk it and it is a struggle to keep him at a distance

2. John will jump backwards with both feet lifting off the floor landing at the same time (27-29 month skill)

• he bounces up and down but does not jump in any direction

3. John will catch an 8 inch ball from 2 feet away (35 month skill)

• John can do this when he is focused, but most of the time it is a fight to get him to want to play ball or focus on the ball
  

FINE MOTOR GOALS

1. John will build a tower using 6 1" cubes (22-24 month skill)

• The idea here is getting his fingers to release the block without knocking the tower down by pushing too hard as he releases

2. John will string 3 beads on a heavy cord without assistance (23-25 month skill)

• John has met this goal

3. John will fold a paper in half making a crease without crumpling the paper (24-26 month skill)

SOCIAL GOALS

1. John will defend possessions using the word "mine" (23-24 month skill)
2. John will begin to obey and respect simple rules (30 month skill)
3. John will participate in circle and interactive games (30 month skill)

SELF HELP

1. John will demonstrate an understanding of common dangers by staying away from them on request (24-30 month skill)
2. John will help bathing self (30 month +)
3. John will help dress with supervision requiring assistance with fastenings (30-33 month)

*John's self help skills dramatically changed once language increased. At home, he undresses and dresses himself with a little bit of assistance, he brushes his own teeth, will clean himself in the bathtub, etc. I would say that he is pretty close to his own age range in this category.

Setting the Goals: Casa Colina

Part of the Early Intervention program is to determine at what level John is at in each of the developmental areas and develop goals for him to achieve. His one-on-one time during Early Start at Casa Colina works on these goals, as well as reinforcement in the home and other areas in school. These goals were set in July after a few weeks of observation and testing. The Current Level for each category is where he was tested at to determine starting skills for goals. John is currently 33 months old.

Here are a list of John's goals through Casa Colina Early Start. Once he is evaluated through the START program new goals will be set. I am interested to see what level he will test at in each of these categories. You will see where he has made his progress and why I consider the early intervention a success. At the Regional Center testing, he was unable to do many of these goals or his attention was so poor, it was hard to tell if he could do them or not.

Gross Motor Goals
( current level was 26 months)

John will catch a large ball (25 month skill) -

• if paying attention, he can do this, but really doesn't want or like to play catch

John will keep his feet on tricycle petals (27 month skill)

• this last week he did this; usually he sits on it and then wants to walk away; this week he stayed on for an entire circle around the playground
  

John will run avoiding obstacles (27 month skill)

• this is a goal set because he usually isn't paying attention and needs to be reminded to "watch where he is going"
  

John will take a few steps on a balance beam (28 month skill)

• He did this the first time and has met this goal already;

John will jump a distance of 8-14 minches (30 month skill)

• He bounces up and down, but does not jump forward or backward with both feet together

Fine Motor Goals
(current level was 21 month)

John will imitate a vertical stroke (21 month skill)

• He will copy a horizontal stroke, but doing a vertical stroke is slowly developing

John will fold paper imitatively, not precisely (22 month old skill)

• John is doing pretty well with this, but he'd rather crumble it in a ball

John will string 3 one-inch beads (24 month old skill)

• John has met this goal already

John will snip with scissors (24 month old skill)

• John can close, but has a problem opening the scissors

John will replace a precise picture in a puzzle board (28 month old skill)

• John has met this goal, but needs more consistency

John will build a tower using 8 blocks (29.5 month skill)

• Attention and staying focused on the task is a big deal here; he also presses too hardand the blocks fall
  

John will build a 3 block bridge using cubes (31 month skill)

• John didn't understand the concept of this at first, but is starting to want to do it on his own
  

Receptive Language
(current level was 17 months)

John will attend to speaker when given 1-2 step directions with minimal prompts (22 months)

• John usually needs to be re-directed and reminded what he is supposed to do

John will identify 2 objects from a group (18 months)

• John has met this goal

John will begin to understand the use of action verbs using a preferred toy (19 months)

• John has met this goal

John will participate with the therapist in 3-5 directed tasks for 3-5 min

• John has a hard time staying focused

John will understand personal pronouns like "give it to me" or 'take to him" (20 months)

• John has met this goal

Expressive Language
(current level was 17 months)
*** this is the biggest area of improvement as far as day-to-day life at home

John will use 2-3 word sentences (27 months)

• John now says "ride in Grammy's car" "watch High School Musical" "I want playdough" pronunciation is poor and getting better, but he is using the words to make sentences and to show his wants/needs -- this area has come SOOO far
  

John will increase vocabulary on weekly basis (22 months)

• This has been amazing to watch

John will initiate and use 7-10 words in class (16 months)

• He was very verbal in class this week, meeting this goal and surpassing what was expected
  

John will imitate environmental sounds (19 months)

• He is starting to use car and airplane sounds, etc.

Cognition Goals
(Current level was 21 months)

John will understand the concept of 2 (33 months)

• This is a very difficult concept for John; he gets frustrated and doesn't really knowwhat he is supposed to do when asked for "2 of them"
  

John will demonstrate the use of common objects (26 months)

• He has met this goal

John will give one of many -- the concept of 1 (27 months)

• He sometimes can do this and sometimes cannot; depending on level of focus

John will match identical pictures (28 months)

• He has met this goal

John will listen to simple stories from 3-5 minutes (28 months)

• Working on increasing his attention

John will match 2 colors (28 months)

• John has met this goal

Socialization
(current level was 10 months)

John will value his property and say the word "mine" (27 month)

• John doesn't use "mine"

John will participate in a cooperative ball game when facilitated by adult (13 month)

• John protests when playing ball or catch

John will interact with peers using gestures (21 month)

• John watches the other kids, but rarely interacts

Self Help Goals
(current level was 23 months)

John will dress himself with assistance (30 month)

• John has met this goal

John will scoop food and feed himself with less spilling

• we are working on this

John will remove his shoes with laces undone (21 month)

• he has met this goal

John will drink from an open cup he holds with one hand (25 month)

• he has met this goal

John will put his shoes on with assistance (25.5 month)

• he has met this goal

John will wash and dry hands partially

• he has met this goal

Pre-school readiness goals

John will initiate a game with another child
John will participate in a group of 3 for 5-10 minutes with minimum redirection
John will participate in a group of 9 for 5-10 minutes with minimum redirection
John will seek and maintain eye contact for 50% of his interactions


Sensory Goals

John will actively participate in a variety of sensory activities without adverse behaviors
John will tolerate heavy work such as pushing and pulling therapy balls
John will tolerate movement on a swing or scooter board
John will tolerate a variety of tactile experiences such as foam soap, play-dough, and thera-putty