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

Regional Center

I thought I'd talk about California's Regional Center and how it relates to our experiences with John and his therapy.

According to the California Department of Developmental Services website, Regional Centers provide diagnosis and assessment of eligibility, as well as help to plan, access, coordinate and monitor the services and supports that are needed due to a developmental disability.

Infants and toddlers (age 0 to 36 months) who are at risk of having developmental disabilities or who have a developmental delay may also qualify for services. The criteria for determining the eligibility of infants and toddlers is specified in Section 95014 of the California Government code. These services are provided through their "EARLY START" program. In addition, individuals at risk of having a child with a developmental disability may be eligible for genetic diagnosis, counseling and other prevention services.

I am going to concentrate on the infants and toddlers portion of the Regional Centers.

(from their website, sited above):

Who is eligible?

Infants and toddlers from birth to 36 months may be eligible for early intervention services if through documented evaluation and assessment they meet one of the criteria listed below:

1. have a developmental delay in either cognitive, communication, social or emotional, adaptive, or physical and motor development including vision and hearing; or
2. have established risk conditions of known etiology, with a high probability of resulting in delayed development; or
3. are at high risk of having a substantial developmental disability due to a combination of risk factors.
   

What early intervention services are available?

Based on the child's assessed developmental needs and the families concerns and priorities as determined by each child's Individualized Family Service Plan (IFSP) team, early intervention services may include:

• assistive technology
• audiology
• family training, counseling, and home visits
• health services
• medical services for diagnostic/evaluation purposes only
• nursing services
• nutrition services
• occupational therapy
• physical therapy
• psychological services
• respite services
• service coordination (case management)
• social work services
• special instruction
• speech and language services
• transportation and related costs
• vision services
  

What happens after a referral?

Within 45-days the regional center shall:

• Assign a service coordinator to assist the family through evaluation and assessment procedures.
• Obtain parent consent for evaluation is obtained.
• Schedule and complete evaluations and assessments for the child's development.
• If infant or toddler is eligible for early intervention services, an Individual Family Service Plan (IFSP) will be developed that addresses the strengths, needs of the infant or toddler, parent concerns, and early intervention services.
• Identified early intervention services that are started in the family home or other community settings.
  

How much does it cost?

There is no cost. Early intervention services including evaluation, assessment and service coordination.

John's Transition out of Regional Center

John's services are paid through Regional Center until he turns 3. At that time, he must transition into the public school system. He will be re-evaluated by the school system to determine eligibility. He must qualify to receive services. This is why it is important to me to find out from someone other than those providing or withholding funding whether they think he continues to show "at risk" behavior, if he receives a permanent diagnosis, or if he'll be able to go into mainstream schooling. As his language develops further, we are (and will be) able to see more clearly where his problems lie. Being able to tell what he understands and what concepts are unclear will help determine what the future will be for John. At this time, it is too early to tell.

Autism Speaks

I read an article on the Autism Speaks website that was very moving and made the 'autism' battle, the "autism" label, and the "autism" spectrum more understandable to me. It explains very well the 'large' spectrum and the terms thrown around.

I wanted to share this article with you today. Please take the time to read it through.

Cure is Not a Four Letter Word

by Alison Singer

Alison Singer is senior vice president of Autism Speaks.

My daughter Lauren -- a typically developing child -- has a wonderful, dynamic friend named Haley, who has been diagnosed with Asperger Syndrome. While Haley is the best reader in the second grade and can argue circles around the school principal, it is gut-wrenching to watch her struggle in school every day. She cannot keep friends and is often all alone on the playground during recess. She is prone to violent outbursts and is generally unable to function in her classroom without one to one support. Sometimes the kids, and quite honestly her teacher, seem afraid of her.

Her mother suffers every day along with Haley, as she wards off the pressure to administer medications that might calm the unruly, disruptive behaviors, but might also extinguish the brilliant light that has helped Haley excel academically. Haley has a personality and a mind all her own; if she were she my daughter I would be similarly loathe to squash it. Haley needs a lot of support and understanding, but she doesn't need to be cured.

Lauren's older sister, Jodie, shares the same DSM-IV diagnosis as Haley, but Jodie has classic autism, which falls on the other end of the autism spectrum from Asperger Syndrome. While I have often marveled at Haley's rhetorical skills and quick wit, Jodie struggles to simply string two words together with any communicative intent. Many days it is hard to believe that the challenges Haley faces with regard to her Asperger Syndrome and those Jodie struggles with are related under the same DSM-IV diagnosis.

At one end of the autism spectrum we often find lower functioning persons like my daughter who cannot speak, have violent tantrums and can be self injurious, while at the other end we have persons who struggle with very significant, but very different, predominantly social issues.

Too wide a spectrum?

I'm sure a lot of thought went into the decision to include Asperger Syndrome as one of the autism spectrum disorders. On a scholarly level I understand that Asperger Syndrome is an expression of the extreme social deficits that characterize all those on the spectrum. Also, I am certainly glad that persons with Asperger Syndrome are becoming able to access support and services if they feel they need them.

But the “differing abilities” of persons with Asperger Syndrome are nothing like my daughter's autism. When we at Autism Speaks use the word cure, we are most often focused on the people at the lower end of the spectrum. I have not met a person with Asperger Syndrome who seemed anything like my daughter. None of these persons, however, has ever met my daughter because it is so hard to take her out of the house.

It is hard to consider her “differently abled” because she is not “abled”. She is sweet and loving and works harder than anyone I know, but she does not have any areas of strengths that I fear squashing through medication, intervention or cure. Without her medication, she cries almost constantly during the day and can't sleep at night. She has frequent seizures. She cannot tell me when she is in pain, or where it hurts. She puts everything in her mouth unless it is food. At age 9, her favorite game is still “this little piggy”.

Thankfully, recently she has learned to use words to name items she wants and needs, and this has dramatically reduced her violent tantrums. She has benefited greatly from behavioral therapy and from risperdal and depakote but she has a long long way to go. She has a neurological disorder that responds to antipsychotic medication.

Her pain is heartbreaking and I pray every day for a cure. I do not use the word cure to insult other people on the spectrum. I use it because it accurately conveys my hope that one day, her constant struggles will end and she will know a different, pain-free life.

Use of the word cure holds particular meaning to parents whose children suffer regressive autism. These parents I often feel suffer the most, as they had a glimpse of their children before autism. These parents seek a cure because they remember the child they had and want him back.

Autism Speaks' constituency tends to be dominated by parents of lower functioning children because many parents of children who are diagnosed as high functioning enough to be mainstreamed do not want to be associated with autism because of the stigma that is still attached to the disorder and for fear that their children will suffer from the label. Thus, our community does tend to be dominated by the faction of parents in search of a cure.

For this reason, much of our community struggles with the portrayal of basketball star Jason McElwain as the poster child for autism. My daughter can't carry on an impromptu conversation with the press the way Jason did. She can't make a basket. She can't throw the ball. She couldn't sit still to watch the Teen Choice Awards, and I daresay she'll probably never receive one. Jason is a hero for all he has accomplished, but the kids who struggle to learn to count, use a fork and say “I love you” are equally heroic.

Asperger Spectrum Disorder?

A good deal of the furor over the word cure may be the result of confusing “autism” with “autism spectrum disorder.” There are five diseases that fall under the autism spectrum disorder umbrella, one of which is autism.

One of the five, Rett's Syndrome, has its own advocacy community. The gene that triggers Rett's has been identified and yet the Retts community does not protest when we say we do not yet know the genes that trigger autism, because they are aware we are speaking of autism and not all of the autism spectrum disorders.

When Asperger Syndrome groups use the term “Asperger” it is clear what they are talking about. When autism organizations use the word autism it is often unclear whether we are talking about autism or the entire spectrum, including Asperger Syndrome. Most of the time, we are talking about autism.

But for whatever reason, all five disorders are placed together under one diagnosis because the similarities between them are greater than the differences. Perhaps we could take a lesson from other disease advocacy organizations. There are many different diseases that fall under the umbrella “cancer”, but no one argues that the intervention for leukemia should be the same as for brain cancer. No one says that bone marrow research is insulting because it doesn't serve the needs of persons with brain tumors.

Hope is not a four-letter word

At Autism Speaks, we are committed to bringing a voice to all who struggle with any type of autism spectrum disorder. Our goal is to do this by funding science that will find new treatments, and yes, ultimately, we hope, a cure for autism.

In fact, in our last round of grants, we funded several projects focused on Asperger Syndrome and high functioning autism. We appreciate that persons with Asperger Syndrome have different needs than persons with lower functioning autism but we all need more options and new opportunities.

Our hope is not to alienate but to unite in order to bring greater awareness of autism spectrum disorders to the public at large and thereby greatly increase public funding and private donations for treatment and research, increase access to services and reduce the stigma that is still associated with autism spectrum disorders. By shining a strong spotlight on autism spectrum disorders we can create a brighter future for all those who are affected.

John will enter S.T.A.R.T.

S.T.A.R.T. stands for Specialized Team for Autism Related Therapies

There is an opening for John in the Casa Colina START program beginning in September!

The program is one-on-one therapy through all areas of development. It concentrates on building social, sensory-motor, play, communication, adaption, and cognitive skills.

He will go through an in home evaluation in all areas to determine his Individualized therapy plan in each area.

There will be 4 kids in the class with 4 therapists -- they have some group activities like circle time, snack time, and project, but then each kid rotates through speech therapy, occupational therapy, imaginary play, etc. He will receive the Occupation Therapy/SI through this program, although he is still schedule at the end of the month to have an OT screening through Foothill Presbyterian Hospital.

This will replace the Early START program he is in now, which is the "mommy and me" preschool. It has a similar format, but is more structured with less kids, one-on-one, and no parent participation in the class. Parents watch in the observation room. He will attend, I believe two times a week. We are awaiting Regional Center's approvals to go through.

Show & Tell: Neurofeedback

Commercial for Neurofeedback at EEG Institute. (John is going to Centers For Success for the same thing)



Click HERE for an article in Science Today from Feb. 2008 regarding the link between Autism and Neurofeedback.

Although John does not use the video game controllers seen in this news story, the process is very similar. The technique was first developed for ADD/ADHD symptoms and recent studies show that brain self-regulation helps in all areas. This story is here is a little bit different than John's experience, but it is worth the watch to help understand the technology.


John is currently watching a movie on the top part of the screen to hold his attention (since he is so young) and on the bottom of the screen is the "visual" rewards represented in color patterns. As he hits the target brain activity determined, the visual colors get larger and as his brain strays away from the target, the color almost disappears. As he hits the target, he also hears an auditory beep. Together, the auditory beep and the visual feedback 'reward' the brain for hitting the brain activity target, training the brain to self-regulate. The tech told me that 70% of patients even fall asleep during the training because it is such a "workout" for the brain.

A 2006/2007 research study (Coben/Padolsky) of 37 autistic children concluded that there is an 89% success rate to improve Autistic Spectrum Disorder symptoms. In only 20 sessions, there was a 40% reduction in core ASD symptoms. (the study only followed children through 20 sessions)

Click HERE for an article in OC Register for an article on Neurofeedback and how it works.

Do I see it or do I not?

In follow up to the last blog regarding the Autism spectrum, I'd like to take the time to address the most asked question I get. Do I see John as Autistic?

To be perfectly honest, there are some days when I think, "yeah maybe they're right" and then other days when I feel that "autism" isn't John's problem. There are things about this syndrome that make it difficult to really determine whether John falls within it or not. The fact that "every child is different" and shows a varying degree of symptoms is one of those things. The other is that when John is around other children with it, parents of other children with Autism, therapists, etc., they often state to me that they are surprised with the autistic diagnosis so young and if "he really has it, it's mild".

Before I go on, I want to make it clear that I KNOW something is "not right" with John's development. He is significantly delayed in many areas and has behaviors that are not 'normal'. That is why I am learning all I can about all of the things that affect John, his behavior and his development. He has very scattered skills, with very low attention span, and is easily distracted.

The more I am reading (and writing) about SPD (Sensory Processing Disorder), the more I believe that John has sensory issues. Now, most autistic kids suffer from SPD as well, but not all kids with SPD are autistic, but the pattern of behaviors (including limited eye contact) are associated with SPD.

Now, I'm not saying John is not autistic, by any means. I'm just starting to realize what "at risk" behaviors truly are and why an early intervention program can help kids whether "at risk", autistic, or just developmentally delayed. The "label" of autism right now gets the help needed in the early intervention programs. At 3 years old, he will be re-tested through the school system to determine whether they believe he can continue through the public school system.

****Now, all of this leads me to my point. I will not "know for certain" if John is autistic or not, until a medical doctor, that is NOT tied into giving me some sort of funding or early intervention help, gives me that diagnosis. We are awaiting confirmation that John will be seeing an autistic specialist in October to give us a full evaluation. That diagnosis will be the one that will be the determining factor whether I have to fight for services (and what kind of services to fight for) or not. I am not going to let the school system tell me he isn't autistic or he no longer needs services. As his language develops and he gains certain skills through early intervention, it will become clear whether or not he is autistic, but someone who is granting or denying me service will not be the ones to give me that diagnosis.

Determining if John is/was eligible for Regional Center's services had a lot of contributing factors, including which Regional Center we got to go to. Some Regional Center's have more funding than others, for example. The first round is to pass an over the phone interview with the caregiver to determine if an evaluation should be done. I was told that every Mondays a committee meets to go through the calls from the week and determines which children can come in for a full evaluation. Two therapists hold the 2 1/2 hour evaluation and determine on the spot whether he qualifies for service or not. It was at that evaluation when they told me John was "at risk" for Autism and gave me the "now that your child is autistic" packet. The written evaluation came about 1-2 weeks later, stating that it was an "autistic disorder". That diagnosis qualified John for 25 hours a week of service, although we are not using that much at this time.

To sum it up, I'd like to answer the question by saying that the label John has right now doesn't matter to me. There is a reason why he qualified for service and that is because there is a significant developmental delay. I want to do everything I possibly can to help John progress. I want a medical doctor's second opinion because I don't want funding issues to interfere with his diagnosis. I also don't want the wrong label placed on John. As I am learning about disorders like SPD, I am discovering about different means of therapy. While classes like speech and early start pre-school teach John to do specific tasks to fit into a societal mold, occupational therapy helps to determine what it is that causes John to be delayed in those areas. It seeks to find the underlying cause and fix it through structured therapy. Right now, I'm fighting for the Occupation Therapy Evaluation that will determine if John would benefit from OT/SI therapy. Being pro-active and being involved in your children's therapy and "individualized service plan" (Regional Center's term) is what determines the success for your child. Finding the right 'label' is important in determining how to help.

The Autism Spectrum

Autism is a disorder of the brain that happens while child is still growing. It is a developmental disorder because it affects how a child develops. Autism is a syndrome and not a disease. It's not a case of "having it" or "not having" it. There are varying degrees of autism and the different "kinds" of autism appear on what is known as the "autism spectrum".

According to "What is Autism", handed out by the California Regional Center, the 'autism spectrum disorders' are as follows:

Autistic Disorder: Children with this kind of autism have all the behaviors of autism. This kind of autism is also called "classic autism"

Asperger Syndrome: Children with this kind of autism often have good language skills and high intelligence, but they may have problems relating to others and may have only very specific interests.

Pervasice Developmental Disorder- Not Otherwise Specified (PDD-NOS): Children with this kind of autism have some behaviors of autism but not all. Many children with this have fewer difficulties than those with classic autism.

John on the Autistic Spectrum

According to John's evaluation done by Regional Center, they list that "this pattern of developmental challenges meets the criteria for a diagnosis of Autistic Disorder". John does NOT have good language skills, as that was the main reason I took him in, so a diagnosis of Asperger Syndrome would not have been given at the time.

However, they also recommended a re-testing "after he has had sufficient time to benefit from educational services, and when cognitive abilities can be more reliably determined".

Documenting John's week

The last week was a big week for John. Although the flu went around the family (except for me), and we had some "over stimulated" evenings and mealtimes out, John has progressed visibly this last week.

First of all, his language has really come a long way.
3 speech milestones for John:

1. He said "I want granola bar" with no prompting -

• "I want" has been a speech therapy goal
• He went into the kitchen while playing and called me; then saying "I want granola bar"
• Now, "Granola" was a mouthful and "bar" was more like "ba", but I understood it.
  

2. He is answering questions with "Yes" and "No"

• I started playing a game with him to help him understand "Yes and No" because he never would use it so we weren't sure if he had the concept or not
• I would ask him in the parking lot "Is this mommy's car?" I would point to different cars and say "no" and then finally to mine, saying "yes". For about 1-2 weeks he's been playing along with me, saying it.
• A few days ago, I asked him if he wanted play-dough and he said "yes" --- first time he really used "yes" in answer to a question; I used to get grunts, squeals, happy screams of delight, and grabbing, but no language for "yes", so this was a big deal!
  

3. He wanted an "apple bah" for breakfast, which is an apple juice box, but I was out and told him I had to buy more at the store. We then went to school, lunch, napped, back to school for speech, and then a neurofeedback session. I called Bill on the way home and told him I was stopping at the grocery store to buy something for dinner. When I got off the phone John said "sto. Buy apple bah". I was excited that he was able to relate 'store' to buying the apple juice boxes, as well remembering from that morning!

John also has "pooped" in the "potty seat" all week long! He has discovered that he enjoys "passing gas" while sitting on the toilet, and he gets a sticker if he actually poops in the toilet, so he spent the week collecting his stickers. I am very very close to saying that he is fully potty trained. Although, going to the bathroom and "wash ands" is becoming an obsession, I am pretty excited to have gotten through this milestone with such little problems.

Today, something else happened -- twice. I was reading about sensory children who need their muscles 'squeezed' or crave bear hugs. One mother talked about her experiences of squeezing her child's muscles before going to sleep. The book also talked about using pillows to 'sandwich' the child who likes to be bear hugged, etc.

I needed John to take his nap between speech and the in-home teacher arriving. He was so wound-up that I wasn't sure he was going to settle down in time to get an hour nap in. I remembered what I read. So, I started with his hands. I squeezed them. He closed his eyes and smiled. I moved up his arms, squeezing firmly. He rolled onto his stomach on his own, so I started at his feet and began firmly squeezing his muscles. He moaned slightly, but seemed to relax. I grabbed a pillow and placed it on his back. I pressed down on the pillow, starting at his legs. By the time I got to his lower back, he was asleep. It took a matter of 2-3 minutes!
I tried it again at bedtime, and WOW---same thing.

I'd say in a week, John's language grew, he became potty trained, and bedtime has just got easier! Let's see if this can continue....

EDIT: I wanted to add a few more things now that I have some more time.
John has had 5 neurofeedback sessions since last week. We brought his favorite movies to watch and they incorporate it into the brain training. He sits still for them and enjoys his time there and the process still intrigues me. He has 4 more left of the initial 10 free sessions we received.

At pre-school on Monday, John was able to string 6 beads and attend very well to the tasks he was asked to do. He was not interested in riding the tricycle or practicing jumping at school, but once he got home, he bounced in the bounce house, showing me he can jump.

Yesterday, he worked with Marilyn in speech and she is working on his eye contact. She played peek-a-boo on his lead and she makes sure he looks at her when he says "go" before she allows him to jump in the ball pit, play with cars, etc. (get any of his speech rewards). She uses tokens to show him how many words he needs to say before he gets his 'reward'. He picks his 'reward' from a picture. Yesterday, he picked the ball pit. He loves to hang from the trapeze bar and swing before falling in the pit of balls.

Today, he worked with Tonyia in speech and she is helping him with verbalizing what he wants. He couldn't tolerate the swing today and was not as interested in the ball pit as he was yesterday. He played on the computer, recognizing action verbs. He is able to use the mouse and point to the picture, clicking the one the computer asks him for. Tonyia then tried to get him to recognize audio sounds and then click a picture from 9 choices of what he heard. This was a little harder, as he didn't always concentrate on what he was hearing and would pick any picture.

We are limiting his in-home hours to 5 hours a week, instead of 8, since we will be beginning OT/SI soon and I felt like I could do some of the in-home stuff myself.

Over the last 2 weeks, Bill and I have integrated "circle time" into our bedtime ritual. After bath and brushing our teeth, we now sit down, with 5-6 'props' in the center. Each kid can choose a song to sing, using the props as guides (bus for "wheels on the bus", star wand for "twinkle twinkle", toy boat for "row row your boat", and pom poms for "shake your sillies out", drums for "boom boom", and a spider for "itsy bitsy spider"). Normally, John will play along, but not always sing all the words out loud, piping in here and there. Tonight, John was very vocal in every song and fully participated in ALL of the songs.

At Church on Sunday, John said the "our father" with everyone, out loud. It is neat to hear his language developing. After "circle time", we have prayer time. We start with the sign of the cross, then go into the "our father" and then each of us says our own "Dear Jesus" prayer. Katie's is very dramatic, heartfelt, and oftentimes very long (sometimes we have to jump in and remind her with "amen"). John has always said a "Dear Jesus" prayer, but we weren't sure what he was saying. Over the last week, it's been so cute to hear his little words thanking Jesus for his "momen" and his "daden" and "kayden". (Mommy, Daddy, and Katie) He prays for Katie's school and John's school, and he always smiles after he says "aden" (amen).

I can't tell you how neat it is to hear and understand the words coming out of his mouth.

Proprioceptive Sense

To continue on with the last few days theme, I am going to concentrate on the Proprioceptive Sense, as documented in The Out-of-sync Child, by Carol Stock Kranowitz.

"Proprioception tells us about our own movement and body position"

It informs us about where we are in space, how our body parts relate to one another, how much and how quickly our muscles stretch, how fast we are moving through space, how our timing is, and how much force our muscles put forth.

"We get the most and best proprioception when we actively stretch and tighten our muscles in resistive motions, against the pull of gravity" (doing a push-up or doing heavy work like hoisting a loaded laundry basket)

Muscle sensations come through the proprioceptive system, which works closely with the tactile and vesitbular senses (discussed in previous blogs). Proprioception helps integrate touch and movement sensations. Due to the relationship, there are two kinds of processing: Tactile-proprioceptive (judging the weight of a glass of milk or holding a pencil efficiently to write) and Vestibular-proprioceptive (to help throw and catch a ball or climb stairs).

"Another very important function is to help modulate our arousal level".

Proprioceptive experiences calm and organize us. It's these kind of activities that help settle children before they sit to listen to a story. Oftentimes, this is the purpose when someone tells you to stand and stretch for a minute before continuing a lecture or seminar.

Proprioceptive Dysfunction

Proprioceptive dysfunction is the inefficient processing of sensations perceived through the muscles and skin, as well as the joints. (it is almost always accompanied with tactile and/or vestibular problems).

The difficulty in processing the sensations about position and movement of body parts can cause the child to have difficulty using this information for adaptive behavior. Oftentimes, this kind of child is labeled the 'klutz'. Exerting too much or not enough pressure while handling objects is a problem for these children. (breaking pencil points or poor grip on objects or trouble holding two objects of different weights)

To compensate, these children oftentimes needs to use their eyes to see what the body is doing. They need the aid of vision to do things that can normally done by feel. (zipping a jacket, getting out of bed in the dark, orienting body to get dressed)

Overresponsive - avoids stretching and contracting muscles; lacks the 'internal eyes' to see what body parts are doing; shun playground activities; typically picky eaters

Underresponsive- lacks the inner drive to move and play; usually clumsy with toys and materials, may not know they are sitting in an uncomfortable position; may not be able to orient body to get dressed

Seeking - bumper and crasher, active mover; craves passive movement to muscles; may bite, kick, hit and behave in an aggressive manor; oftentimes engaging in self-stimulation, such as biting their own skin or banging head against wall.

Proprioceptive Sense and John

As far as I can tell from the checklists, John again, is a sensory seeker. Many categories here had checkboxes that were not age appropriate for John, as I could not answer one way or another. He is too young to tell if he has low self esteem, lacks self confidence saying "I can't do that", has messy school work, , etc. There are times in his speech that I can tell he 'knows' he can't say the hard E sound. (as in bee, Mommy, please). He is now imitating almost everything we say and if we ask him to say a word with the hard e sound, he all of the sudden won't imitate. So, there might be something there, but again, he seems to young to tell for sure.

The Vestibular Sense

Using Carol Stock Kranowitz' book, The Out-of-Sync Child as a reference, I am going to concentrate on the Vestibular Sense today.

The Vestibular System

The vestibular system sends sensory messages to our brain about balance and movement, generating muscle tone so we can move smoothly and efficiently. The receptors for vestibular sensations are hair cells in the inner ear, stimulated by gravity. It is what responds when we feel ourselves "falling"-- the response being self-protective reflexes.

Vestibular Dysfunction

Vestibular dysfunction is the inefficient processing in the brain of sensations received through the inner ear. Posture and coordination can be off. Eye movements are influenced by the vestibular system, so visual problems can occur --- inadequate gaze stability, inability to focus on moving objects, reading problems due to coordination issues with left-to-right eye movement, etc. It can contribute to difficulty processing language. Certain movements that should produce a calming effect do not for the out of sync child, causing them to be unable to calm themselves down. Difficulty moving smoothly interferes with behavior and attention.

Overresponsivity - children respond negatively to movement; causes emotional outbursts or overexcitement; can't organize sensory stimuli due to overload; some may be intolerent to any movement at all;

Gravitational Insecurity - no sense of stability; primal fear of falling - abnormal distress and anxiety about falling

Underresponsivity - this child doesn't seem to notice changes in movement; these children typically were called "easy babies"; loved curling up for long naps; later lacks any motivation to want to move; does not usually seek movement; needs extra movement just to get going, but then once started, has difficulty stopping; oblivious to the sense of falling

Seeking more - can't get enough of movement; increased tolerance for movement; enjoys vigorous activity; loves being upside-down, loves to climb - -uses everything for a ladder; loves swinging for exceptionally long times; loves twirling in circle --oftentimes seeming like they don't get dizzy; darts from one activity to another; short attention span even for things they enjoy; constantly on the go, but moves without caution or good motor coordination


Muscle Tone is the degree of tension normally present when our muscles are in the resting state. A child with a vestibular dysfunction may have low muscle tone. (this is not strength of muscles, but the state at which the muscles are at rest). Their muscles lack the energy needed to be ready to move. It takes a little bit of extra effort to just get them started.

Bilateral Coordination is a term used to describe using both sides of the body to work together. A well-regulated vestibular system helps to integrate sensory information from both sides of the body. Children by age 3 or 4 should be able to cross the mid-line, which means reaching with one hand to the other side of the body (crossing the center of one's body) -- think 'cherry-pickers' from grade school PE class (arms outstretched-twisting and bending to touch our right hand to our left foot and then back to center, reverse) or shaking hands with someone (your right hand with their right hand, crossing over your center of your body).
It's also what contributes to the ability to jump with both feet from a ledge to the ground, as opposed to just stepping off with one foot.---- or using both hands to clap.

The Vestibular Sense and John

For John, I checked 2 of the 4 listed for underresponsive in movement
and 4 of 7 in sensory seeking. I had a lot checked and a lot of question marks in the "sensory slumper with sensory-based postural disorder affecting movement of head, balance, muscle tone, and bilateral coordination".

John had lots of scattered skills throughout this section, but nothing that is definitive for me, although my gut tells me he is the sensory seeker for movement.

For example, he moves all the time and is almost always in constant movement, which would tells me that he is a sensory seeker. However, he doesn't vigorously shake his head, doesn't rock back and forth, doesn't like trampolines more than other kids (he will jump for 2 seconds and then he is done, as with everything else he does), etc. Many of the questions in the checklist were not age appropriate for me to know yet with John (like seeks out thrill rides at amusement parks).

He appears at times to be uncoordinated, but can clap, cross the mid-line, open doorknobs, is already potty trained (poor bladder control is one checkbox), and loves structured activities (hard time with structure was another check box) -- he actually loves the structure.

So, to sum it up, there seems to be an issue here for John, but I can't pin point it myself. I'll have to see what the OT evaluation shows.

The Tactile Sense

The tactile sense is the sense of touch. Tactile dysfunction is the inefficient processing in the central nervous system of sensations perceived through the skin.

In today's blog, I will be using Carol Stock Kranowitz' book, The Out-of-Sync Child, as my main source of reference for this information. I will be concentrating on the tactile sense today, but there are other senses that need to be and will be discussed in later blogs.

Tactile Sense at Work

A normal tactile sense lets us know when something feels nice and when something feels wrong. We can sense danger through touch (self preservation), as well as enjoy touch. Touch lets us know when someone is "too close" to us or if something is "too hot" for us. Normal tactile sense allows us to discriminate what kind of touch we are feeling.

Tactile Dysfunction

Children can be tactile defensive (overresponsive) - they respond negatively to unexpected, light touch senstations; uncomfortable with touch; will over respond with a fight, flight, fright or freeze response

Children can be tactile underersponisive -they disregard touch --soothing or painful; may not be able to self-protect because he can't 'sense' anything touching him

Children can be tactile sensory seeking - they crave deep pressure, more skin contact than most, touch & feel everything in sight, handle things that other children understand are 'no-nos'; they just have to touch it; intense & impulsive; loves messy play, crams mouth with food; gets too close to other people - can touch to the point of annoyance

The tactile sense affects everyday skills, such as body awareness, motor planning, visual discrimination, language, academic learning, emotional security, and social skills.

"The child with poor tactile awareness in his mouth, lips, tongue, and jaw may have a sensory-based motor problem called oral apraxia, which affects his ability to produce and sequence sounds necessary for speech". quoted from The Out-of-Sync Child by Carol Stock Kranowitz.

How Tactile Dysfunction affects John

I see John with a Sensory Seeking Tactile dysfunction. In this section of the Kranowitz' book, there is a checklist. In the Sensory Seeking category for Tactile dysfunction, I checked 12 of the 15 options. In the other categories, I checked 0 of 17 boxes for over responsive to being touched, 0 of 17 for over responsive to active touch, 4 of 14 for Under responsive and then 12 of 15 for sensory seeking. (the ones I didn't check in that category were 1. twirls hair in fingers 2. seeks really cold or really hot bath water 3. prefers steaming hot, icy cold, or spicy food )

Recognizing Sensory Processing Disorder

I am continuing to read the book, The Out-of-Sync Child, by Carol Stock Kranowitz and am positive that an OT evaluation will reveal that John has Sensory Processing Disorder. (SPD)

According to Carol Stock Kranowitz, SPD is the inability to use information received through the senses in order to function smoothly in daily life.

There are 3 categories within Sensory Processing Disorder and 5 sub-categories under those 3 main ones. The three Disorders are:
1. Sensory Modulation Disorder
2. Sensory Discrimination Disorder
3. Sensory Based Motor Disorder

Under the Sensory Modulation Disorder, the subgroups are :
1. Sensory Over-responsivity
2. Sensory Under-responsivity
3. Sensory Seeking

Under the Sensory-Based Motor Disorder, the subgroups are:
1. Postural Disorder
2. Dyspraxia

John falls under the Sensory Modulation Disorder as a Sensory Seeking Child, based on my own evaluation using Carol Stock Kranowitz' checklists.

This kind of child wants "more" -- wallows in mud, dumps out toys (rummaging through them for the texture), chews on objects and shirt collars, runs and 'crashes' into furniture on purpose, moves constantly, fidgets, loves being upside down, takes bold risks, craves bear hugs, loves being squeezed, seeks heavy work and vigorous playground activities.

With sound, I see John having aspects of all 3 main categories -- he covers his ears to close out normal everyday sounds (microwave and hair dryer) -- overresponsive child
He ignores ordinary sounds and 'turns on" to exagerrated sounds -- underresponsive child
He loves crowds and places with noisy action --- sensory seeking child

I also notices some motor skills issues -- low muscle tone and fine motor planning with his mouth (although with speech therapy, this is getting so much better -- this week, he can now blow bubbles consistently!)

Many issues can arise because of sensory processing issues. Such as:
Self Regulation - inability to adjust mood (calm down once aroused)
Sleep Issues - want or need to sleep with parents, difficult falling asleep, staying asleep, and waking up
Eating Issues - picky eater, texture issues, lack of coordination to chew, swallow, and breathe
High Activity Level
Inattention
Impulsivity
Poor Communication
Other issues like Autism, ADHD, Selective Mutism, Down Syndrome, etc may accompany SPD

So, to sum it up for the day, Sensory Processing Disorder is difficulty in the way the brain takes in, organizes and uses sensory information, causing a person to have problems interacting effectively in the everyday environment. Through OT/SI (Occupational Therapy Sensory Integration), children learn to develop their nervous system. A professional evaluation and diagnosis is necessary to begin OT/SI therapy. John has had a primlimary screening through Casa Colina, in which they determined he needed a full evaluation.

*This information was taken from Carol Stock Kranowitz' book, The Out-of-Sync Child.