A change is coming...it's a good thing, really!

'Milo has received services since just over 2 years of age; Occupational Therapy (OT), Speech, and Early Intervention. Since starting PreSchool at age 3, he has been provided OT, Speech and Adaptive PE (APE - for gross motor skills) thru LAUSD. All, thankfully, free of cost. Each year at the IEP meetings, his services have always been reviewed an renewed. Today, sitting in the office waiting for the meeting to start with 'Milo's dad, I said to him, do you think 'Milo even needs to continued speech therapy anymore? After talking it over, it was clear to see that he has come a long way, even in the past few years, that we agreed to bring this up at the meeting. Then I said, what about APE? He's been playing soccer and he seems to be much better with the skills as well. And again after discussing, we agreed to also bring this up in the meeting.
So here we are, 'Milo's teacher, his speech teacher, the vice principle, 'Milo's dad and me. We went over the his English, math, writing and so on. Talked about the goals he met (most of which he did!) and some that needed to be adjusted to be more attainable. So when speech came up and the teacher talked about how he's met these goals and how much better he was even since the beginning of this school year and new goal we listened. It was then I said, "we were just talking about this before the meeting started and we're thinking, does he really need to continue with speech? He's come so far in just the last few years; he's aware when he mis-uses a word, and will even correct himself and if clear about that he saying. We feel that he should spend more time on his academics. What are your thoughts?" His teach nearly jumped out of his seat! He said, with a huge smile on his face, "I think this is the first time a parent has asked to remove a service! We have to mark this day down! You guys get it!" He said that parent see progress and they ask for more time on services, but we were asking for just the opposite! This is 1 hour a week, that he is away from class and it just didn't make sense anymore to use that time on a service. He even said, "you should write a book!" I think that was the biggest compliment When the APE services and goals came up, we said the same thing, let's use this time on academics now. I said "he plays soccer now and even wants to try basketball. We think he's ready to transition out of that service as well". They asked how he was doing with soccer, I said he did great, he was even goalie and played defense, blocking shots running up and down the field. They were all supportive of that as well. So now the next step, which is required, is the put in the request for an evaluation in these two areas just to record his progress and make sure these services are no longer needed. I'm sure they will be removed and so next year, he will be able to spend more time in the class on academics. More than likely, the assessment won't be completed until the next school year, but we were able to request that speech be reduced by a half hour a week in the mean time starting the next school year.
All in all it was a great meeting and very happy with the out come. We should start to see some more progress in his academic goals with that extra time in the class. Onward and Upward

IEP: individualized education program - Kids with delayed skills or other disabilities might be eligible for special services that provide individualized education programs in public schools, free of charge to families. Parents work with educators to develop a plan to help kids succeed in school. The IEP describes the goals the team sets for a child during the school year, as well as any special support needed to help achieve them. - Source, http://kidshealth.org/

OT: Occupational Therapy - helps kids who have a physical, sensory, or cognitive disability carry out everyday activities like brushing their teeth or putting on shoes and socks. - Source, http://kidshealth.org/

APE: Adaptive PE - Adapted Physical Education is physical education which has been adapted or modified, so that it is as appropriate for the person with a disability as it is for a person without a disability. Assists in fundamental motor skills and patterns (throwing, catching, walking, running, etc) - Source, http://www.apens.org/

Speech Therapy - With a variety of techniques, speech-language therapy addresses a range of challenges often faced by persons with autism. For instance, some individuals on the autism spectrum do not speak, while others love to talk but have difficulty using conversational speech and/or understanding the nuances of language and nonverbal cues when talking with others. - Source http://www.autismspeaks.org/

Early Intervention - Early attention to improving the core behavioral symptoms of autism will give your child – and the rest of the family – several important benefits that you will not gain if you take a wait-and-see approach until your child enters school at age four or five. A good early intervention program has at least four benefits: It will provide your child with instruction that will build on his or her strengths to teach new skills, improve behaviors, and remediate areas of weakness. - Source http://www.autismspeaks.org/

Diet & Encouraging Picking-Eaters

None of us have this problem, right??  I can tell you, in my personal experience, my son adjusted to food well after being breastfed.  He tried just about anything; fruits, veggies, meats, dairy, the works.  As he got older he stopped eating foods he use to eat.  Now at age 9, he has gotten very picky and specific about food.  He does not like fruit.  In fact, just until a few years ago, he would eat bananas and applesauce, but he refuses those now.  He's actually better at veggies and will eat broccoli, carrots, peas, onion (mixed in foods), string beans and corn.  And forget about breads.  Will not touch or eat and if someone is eating bread near him he has a disgusted look on his face!  So I was excited for this topic.  Here is some information I obtained at a recent support group meeting at CARD.  I feel a disclaiming coming on....

This site does not provide medical advice. The content of the information obtained from CARD and shared here is intended for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding you or your child with Autism. Never disregard professional medical advice or delay seeking it because of something you've read here.

Common Nutrition & Feeding Concerns:

• “picky” eating behaviors 
• Difficulty with transitioning to age appropriate diet 
• Increased Sensory Sensitivity 
• Short attention span 
• Limited variety in diet 
• Need for routine

Common eating preference:

• Preference to dry, crunchy food
• Refusal of soft, smooth textures
• A dislike for fruits and vegetables
• Preference to finger foods
• Preference to certain brands and preparation methods
• Preference for food of particular color(s)
• -some common foods that are preferred:
• Dry cereal, crackers, chicken nuggets, pizza slices, hot dogs and pasta

Impact on growth and development?

The majority of children with ASD are of average height and weight, according to the Center for Disease and Control (2012)

www.cdc.gov/ncbddd/autism/index.html

Other nutrition concerns that are associated with diet:

-vitamin and mineral deficiencies

-gastrointestinal concerns (reflux, constipation, diarrhea)

-food allergies

-drug nutrient interations

Drug Nutrient Interactions

Medication may increase of decrease appetite and may affect vitamin and mineral absorption.

Examples for interactions:

-Ritalin decreases appetite and stunts growth

-Risperdal or SSRI, may increase appetite

-Seizure medications affect calcium, vitamin D and folate metabolism and may need to be supplemented

What we know about Autism & diet implications

• Studies have shown a difference in nutrient intake with typically developing children (CDC, 2012).

• Additional studies have shown children diagnosed with ASD eat less than the recommended amounts of: vitamin C, D, several B vitamins, iron, and calcium

Gluten-Free, Casein-Free diet

-Leaky gut hypothesis; the gut allow peptide metabolites of Casein & Gluten to cross into the blood stream and then into spinal fluid.

-These peptides act as opiates in the brain and interfere with CNS Function.

The central nervous system (CNS) is the processing center for the nervous system.  The two main organs of the CNS are the brain and spinal cord.  The nervous system consists of the brain, spinal cord and a complex network of neurons. 

Some argument have been made that Autism may be influenced by Gluten and Casein diets

GCFC Diet:  Studies and Implications

-A meta-analysis in 2008 showed no-evidence for efficacy of a GFCF diet.

-2010 study of 15 children with Autism (ages 2-16 years of age), showed no significant results.

--However, Parents and Caregivers reported improvement in Autism related symptoms

--Indicate there is more of a need for investigation and analysis within clinical trials

GFCF diet impact on families

-Extra time needed to buy and prepare foods/meals

-Diet makes child “special” or “different”

-Diet makes peer/social interactions difficult by the introduction of this barrier

-High cost of alternative foods

GFCF Diet: Nutrition Implications

Children on the GFCF diet ten to eat more fruit & vegetables, and less bread and cereals.

Common risks of nutrient deficiencies:

Gluten Free diet: Iron, Zinc, B-vitamins and Folate

Dairy Free diet:  Calcium, vitamin D, Vitamin B2, and Protein

GFCF diet:  What to do?

Weight the Pros and Cons and decide if the diet may be an “option” for your child.

Start slowly.  Start with a CF of GF diet first.  Then make a few changes at a time, and observe your child

Supplement Calcium and Vitamin D

Give a Children’s Multivitamin with Minerals

Most importantly, talk to your pediatrician or consult with a registered dietician.

www.glutino.com/

www.gfco.org

www.gluten.net

www.livingwithout.com

www.allergygrocer.com

www.foodallergynetwork.com

Encouragement: picker eaters

Helpful guidelines

-Important to rule out any medical drivers of food allergies that could be causing a dislike of particular flavors or food groups.  (Consult with pediatrician/dietician)

-Its perfectly natural for a child to be averse to eating a food that caused a bad tummy ache or a bout of food poisoning in the past.  Basic instinct!

-Avoid making food a source of conflict with your family!  Arguing over a food item will not make any situation better—tends to make things worse.

7 Stops to trying new foods: 

1. Simply look at new foods items together 
2. Suggest to smell it and/or touch the food item together 
3. When you feel your child is ready, suggest licking or tasting the food item
4. Sometimes it can help to mix the new food item with a familiar and preferred food for the first taste.  (This gradual approach can decrease anxiety about new foods by increasing familiarity. 
5. Try and give your child choices so they can feel in control of their meals (provide 3 choices:  Peas, carrots or salad  -or- Providing a wide array of foods items, like a buffet. 
6. Make you child’s favorite meal, but add a “mystery ingredient” and make a game out of it 
7.  Include your child in the cooking process, and have him/her choose certain food items (encouraging choice and control can help avoid argument/meltdowns and encourages a more varied diet)
   It’s important to find solution with you child.  The more fun, the better. Make faces on pizza with different vegetables and pepperoni. Paint with pasta sauce. Experiment with how food changes color or consistency when mixed together or cooked. Each of these activities will help a child become more comfortable around new and different foods, create opportunities for trying new tastes and keep food discussion positive.  Make mealtime an opportunity for flexibility, education, choices, and most of all, fun and children will respond favorably, whatever their age.
   
   source:  CARD 

Social Cognition and Theory of Mind

Recently at an Autism Parent Support group, the discussion was about Social Cognition and Theory of Mind.  How many of us have experienced our Autism child lack the basic social skill in some degree?  I'm sure at one time or another this has happened.  Example, one story that was discussed was a child who was home with another family member.  The family member was in a different room and had fallen.  The child heard the commotion and ran to see what had happened.  The relative said, "go get your mom, I need some help", the child replied "I'm busy" and walked away.  In my own experience, my son has told other children who were being noisy in a store or other public area to quiet down, in a very assertive tone.  We've gotten some strange looks from parents when he does this... heck I would probably do the same thing.  So I've told him that is not his job and not to do that.  Or in other cases, kids will talk to my son but because he's very fidgety and hyper, they give him an odd look.  

Here are some of the highlights that the group host provided to us:

Social Cognitive Impairments in Autism 

• Inability to infer or empathize others' desires & feelings
• Inability to consider what others know
• Inability to consider what others are thinking
• Inability to infer others' beliefs and opinions
• Inability to consider unintentional behaviors of others 
• Inability to infer communicative intent
• Inability to understand or engage in deception
• Inability to coordinate multiple social cues in a given social scenario

So the question is, can a "Theory of Mind" be taught?  Here are some examples that were provided on how this can be address:

• Train for generalization in a one-on-one setting
• Teaching "rules"
• Role Play / Rehearsal
• Reinforcement / Natural Contingencies
• Generalization to peer iterations

"What is “Generalization?”  It’s a “spreading” or “expansion” of teaching, beyond what was directly or intentionally done.  Example: explicitly teach turn-taking to a child at school and then the child starts taking turns at home with siblings or friends, even though no one ever tried to teach turn taking at home" source

Teaching desires

Child's desires

   -Child identifies what he/she wants

Others' desires 

   -Caregiver express/demonstrates desire.  Child identifies/responds to others' desire

   -Target finding out others' desires.  Asking "which one do you want?"

Increase Social-Cognitive Repertoire

   -Begin with obvious reactions, then reduce

   -Generalize to natural social situations

      -Have the child offer snacks to peers

      -Have the child pass out pieces during a game

      -Have the child find out what peers want to play

Teaching Knowing

Child's perspective

   -Target identification of what and how child knows:  "I don't know what the color your socks are because      I can't see them"

Others' perspective

   -Target identification of what others know and how:  "You don't know what I had for breakfast because I       didn't tell you"

   -Target generalization to social interactions

Increase Social-Cognitive Repertoire

   -Utilize visual prompts to increase comprehension

   -Generalize social situations

   -Rehearse and reinforce:

      -Inhibiting telling what others already know

      -Inhibiting asking questions and know answers

      -Providing enought background information for the listener to understand

      -Applying concepts of know to Social Play: Secret/Strategy Games, Hide-n-Seek

Teaching Beliefs and False-Beliefs

Child's own beliefs and false-beliefs

   -Child identifies earlier false-belief:  "I thought it was in the garage"

Others' perspectives

   -Observes others' experiences and infers others' beliefs:  "She thinks I'm doing my homework."

   -Target predictions of others' emotions/behaviors:  "He'll go to the park because he thinks his friend is              there"

Increase Social-Cognitive Repertoire

   -Do Not teach rote responding via mass trialing of scenarios

   -Utilize natural situations

   -Use visual prompting to help child recall earlier  beliefs.  Demonstrate what others think

   -Inferring beliefs must be generalized to variety of stimuli and social situations

      -Characters in stories

      -Characters in videos

      -Creating false beliefs in others: "tricks" and jokes

Advance Beliefs: Intentions

   -Target a variety of Intentional / Unintentional behaviors

      -Accidents vs. "On purpose"

      -Mistakes

      -Playful joking / Mean joking / teasing

      -Lying of inferring intention

   -Target a variety of means 

      -Facial expressions

      -Body language

      -Vocal qualities

      -Previous experience

"Social interaction is not a static or segmented process. Social interaction is a subtle, reciprocal dance where friends continually assess how one’s own behavior is being perceived by others and adjusting accordingly. There are countless “unwritten” rules, rapid perspective taking requirements, and a demand to continually “socially filter” how you communicate to various listeners. Learners on the autism spectrum often lack this intuitive social thinking process of aiming to please and attend to other people in their interactions. Rather, conversations and relationships can appear one-sided or superficial in nature. Children with ASD miss the subtle nuances of non-verbal communication. They are unaware of unwritten social rules. Lastly, children with ASD can be hyper-focused on their own intense interests and have difficulty dampening or managing their own emotions when facing the unpredictability of the social world. It is for these reasons that an approach to increasing social competence should incorporate all aspects of Pragmatics: perspective taking, emotion/non-verbal communication awareness and expression, conversation skills with a social cognitive slant on analyzing skills, as well as teaching behavioral friendship skills." source

Things about Autism you may not know

A friend of mine asked me today, "Seems that it [Autism] affects more kids than cancer, is that correct?"  My answer to her may shock you.  Did you know...
This year, more children will be diagnosed with autism spectrum disorder than AIDS, diabetes and cancer combined.
I know, right?!
**Autism now affects 1 in 88 children and 1 in 54 boys.  That means more kids on the spectrum compared to type 1 diabetes – 1 in 400; childhood cancer – 1 in 2,000; and cystic fibrosis – 1 in 3,500.  Yet Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
It 2012 the total NIH (National Institutes of Health Funds Allocation) budget was $30.86 billion.  Of this, only $169 million goes directly to autism research. This represents 0.55% of total NIH funding!!
Autism prevalence figures are growing.  

• It is the fastest-growing serious developmental disability in the U.S.  
• It costs a family $60,000 a year on average.  
• Boys are nearly five times more likely than girls to have autism.  
• There is no medical detection or cure for autism**

When asked what my thoughts are on what causes Autism, I say this; to me, the cause is irrelevant because it will not change his diagnosis.  I have my theories (vaccines is not one I believe), but something definitely needs to be done to prevent more children and families from being diagnosed.  What I need to see at this point is a cure, but with funding so low, how will we ever see the day Autism is cured or prevented.  This is why AWARENESS is so important.  And this means kids too!!  Kids need to be aware and taught tolerance, compassion, patience and understanding.  Because MY kids will grow up with neurotypical kids.  And so will many more kids on the spectrum.

**resource:  Autism Speaks website

This too shall pass...

Honestly I don't know what it is.  I don't know if it's the holiday rush, the excitement of the holiday season, sensory overload or what, but 'Milo has not been a very good listener at all.  Last Monday he started being distracting at school again and was on and off all week, but on Friday he called a boy in his class a loser...not once, but TWICE!  Even after being talked to about it the first time.  Over the weekend we had planned to go see the Dino movie on Sunday.  Just me and him since little bro has no interest in the movie.  But with that going on at school on Friday I told him if he kept acting up we wouldn't go to the movies. Saturday he was OK; still being loud and very silly.  Don't get me wrong, I'm all for being silly, but when it gets to the point of not listening and calling everyone names (me included), it's not OK.  And I'm no push over when it come to this stuff.  I love my kids, we have fun, I'm very affectionate with both of them, but I am stern when it comes to this behavior.  If I say I'm going to take away games or toys because of behavior, I stick to it.  If it's time out, then time out it is.  I'm rarely lenient with this stuff.  Saturday night I reminded him again and by Sunday morning I came to the conclusion we would not be going to the show.   I was still going to take the little to grandma's for his lunch date with her, but me and 'Milo came back to the house and did chores.  I felt horrible, but I stuck to my guns.  He knew I was upset.  I didn't say much to him, told him to make his bed and left his room.  Sometimes silence is louder than words and more effective than a heavy hand.  I limited my interaction to just answering his questions with short answers.  He was settling down and apologized for behaving badly.  By the evening he was getting noisy and acting up again.  I had to remind him again and ended up taking away Legos.  He seems a little settled again today so hopefully after this holiday bustle he stop bouncing off the walls!

The road ahead

During the evaluation on Wednesday it was suggested that ‘Milo’s pickiness to food was a behavior issue and not necessarily a sensory issue.  They said it may be a behavior he learned to get what he wants.  I have my doubts about that; parents usually know their kids best, but I am not oppose to trying techniques they suggest if it helps him overcome his food issues, whatever it may be.  This is the process I am most concerned about.  How will he react?  How much will they push him?  When will they know if they are right or wrong?  I know that kids react differently to different people, even differently when it’s mom or dad.  I am loving and caring, but strict.  I give hugs and kisses, but also discipline.  I know he is aware of right and wrong.  Just the other day ‘Milo’s teach said he was very disruptive in class.  Especially during singing practicing.  He said 'Milo was laughing and being very silly.  When I got home I told ‘Milo that I was not happy with his behavior in class.  I said when his is distracting that it keeps the other kids from focusing on their work and learning.  I told him he needed to write an apology letter to his teacher.  He did.  He wrote he was sorry for not behaving in class, and he gave the letter to the teacher the next day.  He came home that day and the teacher had said he had an EXCELLENT day.  He was very impressed with his behavior.  Things like this tell me that he is aware and can get thru the day exercising appropriate behavior.  I have no doubt that some of these issues are behavior… as I told the people we met with, afterall he is a 9 year old boy.  But I also want to give him the benefit of the doubt and I don’t make a practice of using Autism as an “excuse” for him to run a muck.  ‘Milo has great potential I know it.  I’ve seen it.  I am sure that some of these actions out of frustration happens so fast that before he’s realizes it he’s made a mess or starts to meltdown because he will say after, “I hate it when I’m crazy”.  And at those moments I tell him, “you’re not crazy.  You just need a better way to work out your frustration and learn to calm yourself”.
Thursday when I got home from work the first thing he asked was if he could check his dinos on the iPad.  My mom said, “you have to see his room”.  He had had time out and did not like that and proceeded to throw toys all over his room.  I told him that he would have clean his room and finish his homework before checking his dinos.  He did.  He also told grandma “I genuine apologize for not behaving”.  (smile)  Later that night I talked to him a bit about the meeting we had with CARD (which ‘Milo was required to attend) and I told him that people will be coming to the house to help us figure out a way to work thru those times he’s frustrated.    I told him that they would also be helping him to try new foods… he made a little face and I said this will be a good thing.  I told him it will be good for all of us so we can all learn to help him work thru times that make him upset or frustrated.  He smiled and said OK.  I’m expecting this is going to be a rough road.  The people we met with on Wednesday said it could very well get worse before it gets better because they expect him to be resistant to change.  I think that is the part that weighs on my heart the most, is that he may/will get upset.  I am trying to stay positive and hope this will not be as hard as I am making it out to be in my head.

And so it begins....

ABA process is in the works.  Below is some info on what exactly this is, but in short, a team will come to the house for observation and help strategize to reduce problematic behavior.  Many of you who know 'Milo personally may say, he's well behaved and well mannered.  I do not disagree, when we are out he does very well.  His social skills have improved so much and his interaction with people is great.  Other than making direct eye contact, he does well holding a conversation now.  But at home when there are things that he is struggling with or just challenging authority (as all kids do at times) it can lead to meltdowns, excitability, uncontrollable laughter or lack of focus.  As a parent, it can fell like YOUR under the microscope.  YOUR parenting skills are not up to par.  YOU need to learn how to control you kids from outsiders who don't even know you.  But it really isn't' about the parents, so you have to really not take it personally.  Trust me, I know I'm a good mom.  And part of being a good parent is knowing when to be vulnerable and allowing others to help.  Both my kids are respectful, polite, and well behaved, this I know.  This is not a decision I made lightly, there is a lot of commitment in this.   I have struggled for the last two years wondering if this is the right thing.  At this time, I feel it is. 

ABA RESOURCES: WHAT IS ABA?

What is ABA TherapyBehavior Analysis is the scientific study of behavior. Applied Behavior Analysis (ABA) is the application of the principles of learning and motivation from Behavior Analysis, and the procedures and technology derived from those principles, to the solution of problems of social significance. Many decades of research have validated treatments based on ABA.

The Report of the MADSEC Autism Task Force (2000) provides a succinct description, put together by an independent body of experts:

Over the past 40 years, several thousand published research studies have documented the effectiveness of ABA across a wide range of:

    populations (children and adults with mental illness, developmental disabilities and learning disorders)
    interventionists (parents, teachers and staff)
    settings (schools, homes, institutions, group homes, hospitals and business offices), and
    behaviors (language; social, academic, leisure and functional life skills; aggression, selfinjury, oppositional and stereotyped behaviors)

Applied behavior analysis is the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior (Baer, Wolf & Risley, 1968; Sulzer-Azaroff & Mayer, 1991). **resource: CARD website**