Discussing Autism

The original PECS are actually Pyramid Educational Products. It is a unique augmentative/ alternative training package that allows children and adults with autism and other communication deficits to initiate and develop functional communication.

The idea for PECS came from B.F. Skinner’s 1957 seminal publication, Verbal Behavior and teaches students to use pictures to communicate with people. ie: students find pictures of what they want and hand their communication partner the picture to indicate their wants and needs.

PECS moves from single pictures to the creation of phrases and sentences and reinforcement systems.

We use the original PECS system in our house just for schedules, especially when we are having a difficult time with transitions and routines. We purchased the Schedule Pictures and the Traveling Schedule Board. However, the Schedule Pecs are heavy on classroom pictures and I would recommend Pics for PECS 2007, which has pictures like Brush Teeth, zoo, I want, MY NAME IS (GOSH I WANT THIS ONE, draw, eat, cut, flush toilet (IS THERE “NO” AS WELL?)

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Minus the Sex stuff, as I write mainly about children, I really like this interpretation of Asberger’s Syndrome…written by a person with Asperger’s. Its gutsy, real, personal, gritty, and understandable. It gives me insight into how my son feels in situations and why he does things.

i can organize thoughts in my head more easily if i use a visual framework, and this i always do. anything linear it’s quite arduous to have to work out, i literally have to go in my head, “okay, for step 1, i just said step 1, step 1 means it’s the first one, so i’m gonna put my first finger out right here, and the finger is on the top so it means the first, and now i’m gonna shake my head to try to get me to remember this, step 1 is this (rush of information), and i shake my head again, and say all right, step 1 is… (say it all over again).” it’s a lot of work. i’m not making it up, that’s literally how i have to work it out in my head. instead i much rather prefer to simply write the instructions down, or be given an illustrated chart instead.

To me, this is so much like my son but completely opposite. He prefers everything linear. This, then this, then this. Ah, got it.

This article helped me get it.

For the first time in my life, and AJl’s life, I pulled the Autism card when talking to a parent…and I hated myself for it. I should never have to make an excuse for my son’s behavior but he was scared today and I had to step in and stop the situation from getting out of hand.

We are at the local Splash Park, a facility that has a large sand pit wherein children bring their own buckets, shovels, and other sand toys to gig and play in the sand. In this area they also have water table and drains for the kids to fill buckets with water and splash sand into. It was in this area that AJ encountered another child around the same age.

This particular boy (I will call him Adam) was active and verbal, playing boisterously with his friends. However, he had brought with him two watering cans that AJ wanted to play with. Adam was not playing with these water cans so according to the unofficial Splash Park mommy rules they became fair game until Adam went home. AJ played with them and shared them when Adam wanted to play with them. AJ did get upset at one point but I resolved it quickly and Adam did not seem to notice.

Some time goes by and I notice that Adam is calling AJ a “Bad Boy” as they are standing at the water table playing. LP does not pay attention but I know that he is listening, as he listens to everything. I let this go on because LP is not reacting and Adam is not taking it any further at this point. (Note, I watch AJ very closely at places like this because of these situations. Adam’s mother is chatting with a friend, something that I would LOVE to do.) Soon, Adam starts to scream and squeal in AJ’s face. They are only inches away from each other across the water table. AJ does not react immediately but after a few screams he looks at me in absolute horror.

I tell AJ to walk away and he calmly comes to sit near me. Adam responds by telling AJ that he is a “bad boy”.

By now I am getting angry because my son has no idea what this kid is doing.

A few minutes later AJ wanders back to the water table to get a cup and Adam snatches it out of his hand and screams in his face again. AJ raises his hand, turns to me and says, “hit?” He is terrified.

I immediately get up and walk over to this child. I get down on his level and ask him, very calmly, not to scream at my son.

In the meantime, his mother finally sees the confrontation and gets up. She asks what is going on and I tell her that he is screaming in my son’s face and that my son does not understand because he is autistic.

She flips and is extremely angry at her son for his behavior. She apologizes profusely for his behavior and reprimands him…never do that again, etc.

Now, as I said before, I have never used AJ’s behavior as an excuse for anything before but in this instance he was scared to the point where he was going to lash out and in my opinion, this child needed to be reprimanded.

Did I do the right thing by pulling the “Autism Card”?

Word Press, Technorati, autism, playdates, behavior, scared, moms, Tags

Crash into me! Boy and I getting sick of this! Summer is supposed to be fun but for some reason Little Pickel is crashing all over the place. I don’t mean crashing into things…I mean crashing into me on purpose!

Kids who are proprioceptive sensory seekers are sometimes called sensory seekers. High functioning autistics or kids with disorders like PDD or institutional autism like Little Pickel crave active movement; pushing, pulling, pushing, crash landings, lunging into walls and people. The love input to the muscles and deep pressure. These are the kids who do great with weights and weighted blankets, vests, joint compressions, lap weights in the classroom, chewies, etc.

However, these are also the kids who engage in self injurious behaviors like hitting, biting, head banging, poking eyes, and pulling hair because it feels good. They crave deep pressure and sometimes pain. Little Pickel did some of those but he also hurts others in efforts to feel pressure for himself. Hitting and kicking others brings him sensory input and when he needs it he seeks it anyway he can.

So, to solve this?

The extremely aggressive child, like Little Pickel, needs an outlet. He needs heavy work all the time.

Here is a great list of Heavy Work activities at one of my favorite sites.

And, some products that we have in our home already:
Kid-Riffic Jump Smart

Rocket USA Bozo Bop Bag

Moon Shoes

Word Press, Technorati, proprioceptive, toys, amazon, out of sync child, institutional autism, PDD, spectrum, autism, aggression, hitting, kicking, biting, crashing, sensory integration dysfunction, Tags

Yesterday I wrote about Special Needs Extended School Year…the definition of it and what is supposed to be included within the ESY classroom. Today I am going to take a look at the Pros and Cons of this classroom.

We have all seen the teen summer school movies wherein the teacher is the one sent in on probation and all the kids are the “rejects” sent there to either stay out of trouble or make sure they pass so they can graduate. Sometimes I feel like my son’s summer school is like this…a glorified babysitting service.

ESY has its pros and cons, as does every school district run program or state mandated program. Can we fix them? Probably not but we can at least advocate for better services or better funding. Here are my issues.

The Good
1. Because the State of Illinois bases ESY on regression-recoupment my son is in the majority of children who will qualify for this specific reason. He transitions poorly and takes a long time to get used to a new routine. Additionally, without a specific routine or schedule he regresses VERY quickly.

Case in point; this past week he has had a bad cold and it was a holiday week. Thus, I have been keeping him inside because it was also very hot. He had very little routine and did not nap because he won’t anymore. He has been extremely irritable, violent, his language usage is down, and he has been even more non compliant than usual. If he had been sick (no fever so this is allowed) and been going to school or had his similar routine he would have been fine.

(more…)

Definition: Extended School Year (ESY)is a program which may provide a disabled child with services during the summer months. ESY programming should be offered to a student who regresses significantly in academic, social and/or related skills that are outlined in that child’s Individualized Educational Program when the child is out of school for an extended period of time.

According to Wrightslaw, every student with a disability is entitled to and individual education plan. Additionally, students also have to be offered extended school year, free and appropriate including transportation.

the Office for Civil Rights (OCR) of the Department of Education ruled that even students regarded as disabled under Section 504 of the 1973 Rehabilitation Act, and not eligible for services under IDEA, have to be considered for ESY services. A letter of finding, issued by OCR regarding the Baltimore city public schools, states that “Section 504 regulations require that the individual needs of every child be examined, considered, and met. While 180 days of school may be adequate for some handicapped students, it may not be adequate for others…”.

Eligibility is determined for each student by the Individual Education Program team. For us, Little Pickel’s team evaluated him on his ability to transition, his frustration level, his communication skills, and his tendency to regress. Because we live in Illinois, they tend to use a regression-recoupment analysis to determine eligibility for ESY.

“In addition to significant regression and/or limited recoupment, courts have set forth other ESY criteria to be applied by a Team, as follows:

* the degree of the child’s impairment
* the parents’ ability to provide structure at home
* the child’s rate of progress
* the child’s specific behavior and/or physical problems
* the availability of alternative resources
* the child’s ability to interact with non-disabled children
* the specific curricular areas in which the child needs continuing attention
* the vocational and transition needs of the child
* whether the service requested is “extraordinary” rather than usual in consideration of the child’s condition.

Tomorrow: Pros and Cons of ESY

Word Press, Technorati, Extended School Year, Special Education, Illinois, Wrightslaw, Autism, Tags

Cross-posted at My Two Boys

Special thanks to Working in Pjs for reminding me that it is certainly Christmas in July! In her post she writes about getting you all ready for holiday shopping.

Alice Meadows at Associated Content, The People’s Media Company, talks extensively about hot to start shopping now to save money and be stress free when the holidays come around.

The Savvy Shopper writes about Christmas in July and the six tips to better shopping.

MomandMurray’s Personal Finance Blog writes about the finances of shopping early.

Even Problogger mentions holiday shopping this past week in his article Seasonal Traffic and How to Capture it for Your Blog.

But, I’m not here to get more traffic or save you money, although I would hope that I can do the latter. I’m here to give you advice on products to purchase. I know that I, as well as my mother (perhaps I learned it from her) start Christmas shopping in July. When I see things I like I get them and store them away. I actually bought presents in February this year and already have Jenn and Grandma Pickel done.

But, that said, my job here is to give you all incredible sensory products for every age.

So, I will be doing a series of posts on age, gender, and sensory processing dysfunction.

True to my word, I am posting Christmas gifts…the best of the best for 2007 for Sensory kids. eBeanStalk.com is one of my absolute favorite children’s stories and they have fantastic child development toys and educational products. This post is all about their sensory products for kids ages newborn to one.

Why do I like them so much?
Our team of child specialists brings a comprehensive approach to child development. Using their collective experiences - Shari, Andy, Deanie, Barbara, and Gopi - ensure each and every facet of child development is covered. They select the toys, create Graduated Play ideas for each toy, author the eBeanstalk instruction cards, answer great FAQ’s, and much, much more.

Happy Christmas Shopping!

For Newborns - 3 Months:
Deluxe Taggie Set
Night Light Soother
Pink Soft & Snuggly Blanket
Baby Tizoo
Ocean Wonders Mirror
Dream Meadow
Mind Shapes
Activitot Tropical Isle
Zolo Linko

6 Months -9 Months
Mini Rib-It-Ball
Polar Bear Touch & Stack
Read To Me Tot Tower
Cow Stacking Rings
Busy Street

9 Months to 1 year
Black & White Blocks
Happy Hippo
Around The Block Wagon
Music & Play Table
Shape & Sound Puzzle Box

Fragile X is the most common genetic disorder, form of inherited mental disabilities and known “cause” of autism. Its getting a lot of press recently because of Chris Benoit, the Canadian Pro-Wrestler who killed his wife and son and then hanged himself.

According to the National Fragile X Foundation “Fragile X can be passed on in a family by individuals who have no apparent signs of this genetic condition. In some families a number of family members appear to be affected, whereas in other families a newly diagnosed individual may be the first family member to exhibit symptoms. ”

Symptoms include:
Mental retardation
Hyperactivity
Short attention span
*Tactilely defensive
Hand-flapping
Hand-biting
Poor eye contact
*Perseverative speech
*Hyperextensible MP joints
Large or prominent ears
Large testicles
*Simian crease or Sydney line
Family history of mental retardation

One of the most difficult aspects of Fragile X is the behavior characteristics and the ability as a parent to deal with those behaviors. Because Fragile X can often “overlap” with Autism (it is the most common known single gene cause of autism.) it is important for all children diagnosed with Autism to be tested for Fragile X. One can certainly aid a child much better by knowing what behaviors to expect.

Fragile X Testing:
The Fragile X DNA test

Until 1991, the only laboratory test for Fragile X was a chromosome test. In 1991 a DNA test, the FMR-1 gene test, was introduced. This is the most accurate test (99+%) for detecting Fragile X. Chromosome testing is still available for other genetic conditions and for other diagnostic purposes. In some cases, your physician may want to have both the Fragile X DNA test and a chromosome test performed. When testing specifically for Fragile X, please be certain that your physician or genetic counselor is requesting the FMR-1 DNA gene test. The blood test usually costs between $300-$600 and results are often available in 2-4 weeks.

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What exactly is the Pfeiffer Treatment Center that we went to? Our pediatrician thinks its a quack center wanting to get our money.

Ped: Never listen to anyone telling you about chelation. All they want is your money. There is no reason to chelate unless they come into your house and find toxic levels of lead or arsenic. Then you obviously need to do IV chelation. Anyone else is just a quack.

Me: (dumbfounded, as I thought she was somewhat on board) Well, we are doing this naturally through vitamin chelation…Vitamin C, selenium,

Ped: (she cuts me off) You can get those things naturally through fruits and vegetables.

Me: (okay, conversation useless) Yes, but there are so many foods that he can not tolerate.

(more…)

I wish I had a code word to tell people about Little Pickel; that he can’t answer them, that he won’t tell them his name.

Mom at the parade today: What is your name?
LP: (stare)
Mom: What’s your name? Brooke wants to know your name so she can play with you.
LP: RRRRRabbittttt, come and get you.
Me: His name is *&^&*^
Mom: (weird smile)

I wish I had a code word to tell people who he is and what he is all about so they understand why he can’t answer them, or why he invades their space, or why he kicks them in the back. (Yep)

Or maybe I should just tattoo his name on him? OOOH, I’ll just tattoo the letter A for Autism. I’m sure that would solve a lot of problems. Okay, mean, I know but I am just getting so stinkin’ tired of people’s looks when he can’t answer them or when he says something weird in return. They just look at you like, duh, he’s four, shouldn’t he know his own name by now? He looks normal, gives eye contact, and seemingly “acts” normal. But then he starts talking about rabbits and eating people up (Where the Wild Things Are) and people just look away (if they don’t know us already).

Thanks for judging. Appreciate it.

Word Press, Technorati, Autism, judging, eye contact, answer questions, acting, normal, speech, echolalia, Tags

I’ve been holding off on this topic for quite a while because it hit a soft spot with me. Back in May University of Rochester reported that children with autism were more likely to be bullies than be the target of bullies because they have pent up energy that needs to be targeted to the appropriate channels and because they have underline medical issues that need to be addressed (like speech and language).

“Children with both autism and attention deficit or attention deficit hyperactivity disorders are four times more likely to bully than children in the general population.”

Recently there have been several instances that I have witnessed (or heard of) Little Pickel being the bully. I was very upset with 1) his lack of concern over the matter and 2) the nature of the attack and 3) the level of violence I saw.

1. In one instance I saw LP stand on the top of a ladder and the playground and kick a classmate in the face as she was climbing up the ladder so she too could go down the slide. Now, why would he do this? Absolutely no idea. I did not see any confrontation and she had not egged him on in any way. When he was reprimanded for this he was not upset but she was quite hurt.

However, this incident occurred toward the end of their year end picnic and LP was extremely disregulated. He was tired, I know he had to go to the bathroom (there had been no bathroom breaks in over two hours), and he needed a sensory calming break. Was this the reason? Possibly.

2. When in the classroom a speech teacher approached Little Pickel and got down on his level to say hello. Instead of responding he head butted her. Why? My assumption is that this was an uneasy transition for him. However, he was apparently more concerned over his head hurting than what he did wrong. The nature of the attack was apparently due to the transition and his space issues but it was quite violent. He hurt her and himself.

There have been several more instances like this since then and before then but I absolutely hate to think of my son as a bully. But is he a bully or is it his sensory issues and his communication issues getting in the way?

I will NEVER excuse my son for his behavior and he is always held responsible for his behavior. However, I will also always try to help him with his sensory issues and his communication so that he does not have to face these bullying issues. Sometimes I feel at such a loss though…that I can’t help him enough.

Every one of us has thought of home disasters; tornadoes, floods, trees falling. And everyone of us has thought of our children being kidnapped or drowning. But when it becomes reality it is so frightening it is absolutely unimaginable.

Last week Little Pickel slept in my bed while my husband was traveling. He woke early, as usual, and went downstairs to get his cars and bring back upstairs. Most of the time he wakes me, goes downstairs, and then comes right back up. However, he has been getting into the habit of going downstairs without waking me and staying down there. Although we have a small bungalow home and I still have a monitor to hear him, I am a very deep sleeper and I am actually loosing my hearing. If I am still sleeping I can’t hear him at all. So, on this particular morning, he quietly got out of bed, went downstairs and never came back up. I have NO idea how long he was awake and what he did downstairs.

Does this make me a bad parent? I hope not.

Does the fact that the back door was WIDE open make me a bad parent? Damn, I hope not. I pray that he just let the dog outside.
(more…)

WOW.

I was shocked when I saw my readership yesterday. But I guess I shouldn’t be, as I believe all of us mothers of special needs kids go through the Pinocchio Syndrome at one point or another. Some of us may grieve for a long time, some short. Some of us, like me, need some help to get out of our funk and seek help from our doctors. I know that I am a MUCH better mom to Little Pickel because I can stay calm in situations where before I would become agitated and frustrated. Zoloft helps a ton.

I want to hear your stories. How do you live with the Pinocchio Syndrome?
Either drop me an email and I will publish them anonymously or drop them in the comment section below.

Word Press, Technorati, Pinocchio Syndrome, autism, special needs, Zoloft, moms, Tags

No, I cannot tell a lie.

I want a normal child.

Yes, its true.

I want a normal child, a “real” boy.

I want one who speaks sentences, who can tell me what he wants for dinner, that he does not like his shoes, and that he wants to go to Grandma’s because he wants to play with the trains - not just that he wants to “go car”.

I want a child who can take a bath without screaming, who will tell me not to touch the back of his neck, and who can tell me why he grinds his teeth all day or head butts me while he sits on the couch.

I want a child who runs like a 4-year-old is supposed to, who is not afraid of the swing when is not wearing his glasses, and who will stop before crossing the street.

I want a child who doesn’t still eat baby food, who can pour his own glass of milk, and who can cut his own food or use a fork.

I want a child who sleeps through the night (and sleeps in until 7 a.m.).

I want a child who will play on the soccer team, play tee-ball and Little League, and who will play kickball in the neighborhood.

I want a child who will share, be gentle, smile, laugh, and ask questions.

I want a child who is patient.

I want a child who tells lies.

I want a child who has friends.

I want a child who will date, have a girlfriend, go to the prom, get married, and have children of his own.

I want a child who will fight with his brother, verbally.

I want a child who will stop trying to physically fight me and talk to me.

I want a child who will learn to drive the car and then break curfew.

I want a child who will make the honor roll.

I want a child who can play in the sand at the splash park and answer “what is your name?” to the younger child who asks him.

I want a child who can stop when he is told to stop.

I want a child who is not afraid to love.

No, I cannot tell a lie.

At one time or another everyone of us grieves for our children and the lives they lose and the lives we lose. However, we have to learn to embrace the children they are. I call this grieving the Pinocchio Syndrome. I went through a tough time of it a little over a year ago when we were first coming to terms with Little Pickel’s delays and possible diagnosis. Unfortunately there was no one there to help me get through it all (except my wonderful husband).

Although we all MUST grieve in order to move on, we all must come back to the place wherein we must help our children. Just like Disney’s portrayal of Geppetto, we must be calming and steadfast guides.

Word Press, Technorati, autism, pinocchio syndrome, real boy, normal, developmental delay, grieve, diagnosis, syndrome, mom, depression, Tags

I’ve been struggling with this diagnosis subject all week even though I have been blogging about it. We just received our results back from the HRI Pfeiffer Clinic on Saturday. Little Pickel was originally diagnosed with Institutional Autism back in February of 2006 when he was just 2.5 years old. He was only out of the Russian Orphanage for 5 months. However, Sheila Gahagan, the Developmental Pediatrician who was conducting the Fetal Alcohol Syndrome study also referred us to an Autism study at the University of Michigan because he also scored unusually high on the CARS test. Unfortunately, he had to be at least 4 years old to be part of that study. So, we looked to other resources.

We went to M.I.N.D., the Michigan Institute for Neurological Disorders for a Neurological evaluation.

They found nothing.

Our final option was the Pfeiffer Clinic, a biomedical facility that specialized in Autism Spectrum Disorders and biomedical treatments.

Metallothionein and Autism-Spectrum Disorders: A database study of 503 autism-spectrum patients has revealed strong evidence of severe copper and zinc abnormalities in this population. Blood testing of autistics and controls indicates (a) most autistics exhibit low levels of the protein metallothionein (MT) compared to controls, and (2) these levels approach normality following our novel MT-Promotion therapy. An outcome study is underway to measure the efficacy of MT-Promotion therapy in treatment-naïve autistics.

Currently, Little Pickel is on what Pfeiffer calls a Primer.

The Pfeiffer Clinic approach has been to treat autistic children with high copper to zinc ratios with an initial supplement of zinc (“Pfeiffer Primer III”) for 6-8 weeks followed by an amino acid supplement (“MT Promoter II”). During the zinc loading phase amino acids, glutathione and selenium should be withheld. A too rapid reduction in copper sometimes causes increased stimming and irritability. Dosing the zinc in a pulsatile manner often reduces these potential side effects.

The Pfeiffer Clinic practitioners also attempt to identify intestinal bacterial imbalances and correct these, remove the toxic metals using chelation or clathration protocols and supplement with appropriate nutrients and digestive enzymes. This methodology has resulted in improved functioning in up to 90% of autistic children, however there are some who get no benefit or who have had side effects (increased stimming, graying of hair, etc).

The good thing? It has worked. He is more verbal and more receptive, sleeps better, is less violent, there is less stimming, and is eating like a horse. He craves hamburgers, cheese, eggs, cocoa puffs (gluten and casein free, of course), and french fries.

The bad? He went through two weeks being a HOLY TERROR when he first started the primer and when he increased his dosage to two pills a day. Our awesome nurse, George, says that he was Chelating his high Copper out of his system. I would hate to see what would happen if he had a fast Chelation.

Little Pickel’s test results were interesting, to say the least. In my opinion, they were indicative of Organic Autism. He has a vast amount of Heavy Metals (including Mercury, arsenic, aluminum, titanium, uranium, silver, nickel, and cadmium), a bacteria gut imbalance, yeast, VERY low ferritin, high copper (but average zinc, calcium, and magnesium), and low Selenium. To me, some of those are red flags because of his behavior issues, Sensory Integration Dysfunction, gluten and casein intolerances, and expressive and receptive language delays.

We have our consultation with George next week so maybe we will get some answers then but I would love your opinions…This is driving me NUTS!

Can you help?
Metallothionein Promotion Therapy for Autism Symptoms: The Pfeiffer Treatment Center is looking for healthy kids between the ages of 3 and 10 to participate in a research study to find new and more effective treatments for Autism. Participation in the study would involve a small sampling of blood, urine and hair for laboratory testing. A $35 gift card will be issued at the completion of test collection as a token of our thanks. Pfeiffer Treatment Center is a non-profit, outpatient medical facility specializing in biochemical testing and individualized nutrient therapy for children and adults. For additional information, please call 630-505-0300.

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