Transitional Items

When the boys were around 1-1/2, they each had the Fisher Price phone, the one you pull behind you and the eyes move back and forth. Daniel would hold the phone to his ear and walk around and make faces and sounds like he was talking on the phone. He took that phone everywhere, well, the receiver anyway. We had to cut the cord between the phone and the receiver because he was constantly trying to separate them.

The phone was replaced by a small stuffed Elmo. Around this time we noticed Anthony start to carry his small stuffed Elmo too. Almost, everywhere we went. I came to learn that these items, were their "transitional items". Their use: to provide way to cope with transition from one thing to the next with which they needed special comfort. Most children on the spectrum use a transitional item in one way or another, one time or another. It's a form of security when they are stressed. Kind of like a favorite teddy bear or blanket for other atypical (children not on the spectrum) kiddos.

They traded their transitional items every so often, but kept at least one until they were about 4 years old. Now, because of their need for oral stimulation, they both have "chewies" we have attached to their belt loops. It allows them the biting / chewing stim needed as well as a transitional item should they be feeling the need for one. It does not always work as a transitional item, but is there for them if they both have nothing else they've chosen.

We have learned that when they reach for a transitional item, whatever the reason, we act as if it's the most natural thing in the world. For instance, the boys have a firetruck that the lights go on and off, has a siren and plays music. It's a bit big, 1/2 the size of a 24-pack of soda. Anthony wanted to bring it to the store with us, instead of fighting with him to leave it at home, I put him in his car seat with the truck. He played with it until about 1/2 way to the store, I looked back, saw him smile, and about a minute later - heard him drop it on the floor. He didn't need it anymore (at least not as a transitional item) that day.

I've noticed that the more comfortable they are in a particular surrounding, the less they seem to need a transitional item. It's usually when we do or go somewhere new. Until they get completely use to the new surroundings, they will usually pick a transitional item to take. Usually, they are something relatively small (thank goodness).I am realizing that transitional items apply to everyone in one way or another. Some people have something on their key ring that they can't lose, a piece of jewelry they have to wear everyday, or something they have to carry in their pocket or purse that comforts them. Some may call them "lucky charms", but they are items that are carried to make us feel better.

From a mother's heart - transitional items should not be looked at as a bad thing, but as a comfort. Once they've served their purpose, they generally fade. So, what's your transitional item?

A Brief History of Autism

We've dealt with autism for a little while now, and I've got to admit I've been quite curious how autism was identified. What I've found is that before 1943 if a child that exhibited ASD symptoms, (s)he was generally diagnosed with childhood schizophrenia and put into an asylum. They were thought to be mentally ill, incapable of speech and unable to learn or function in the outside world. Case # 1, known as autism's first child, diagnosed with autism was a boy named simply Donald T. He was treated by Leo Kanner, who treated others and was 1st to write on the subject (in the U.S.) of autism. He published his paper on autism in 1943.

Dr. Leo KannerDonald T.Dr. Hans Asperger Dr. Israel Kolvin

Around the same time in Germany, Dr. Hans Asperger was finding similar condition - which is called "Asperger's Syndrome" today.  The differences between childhood schizophrenia and autism remained unclear until 1972, when Dr. Israel Kolvin published a paper actually defining autism.

http://www.webmd.com/brain/autism/history-of-autism

Some of the first treatments for autism were, well barbaric. During the 1960's and 70's the focus for treating autism was through medications (such as LSD), electric shock and other behavior change techniques (which was pain and punishment).

Dr. Ivar Lovaas

In the 1960's a psychologist named Ivar Lovaas at UCLA theorized that if children with autism were rewarded for a particular behavior, they would likely repeat the behavior. This went on to become ABA (Applied Behavior Analysis) and began being used more and more through the 1980's and 90's. Today much of ABA remains the same as when it was developed, only it has been "fine-tuned". ABA, along with speech therapy have helped many diagnosed with ASD. Other therapies can and have been added for people on the spectrum when the need arises.

http://ezinearticles.com/?The-History-of-Applied-Behavior-Analysis&id=2102959

We are so grateful for ABA, speech and the medicines which help our boys function a little better every day. We have had to learn the proper balances for our boys through a lot of guidance and also trial and error. We waited for a long, long time before adding any medications. We tried the diet and the vitamins. We hoped that the ABA would help with some of the other issues, but we finally had to give in and use medication. Our hope is that some day they won't need it, but until then we will continue to do our best to help them move forward. Our next battle is with OT, the assessment for Sensory Processing Disorder (SPD).

I hope I haven't bored you too much. I was curious, and I thought maybe someone else might be as well.

From a mother's heart - Thank God for the pioneers in defining and treating what is now a disorder that affects as many as 1 in 50 children.

Autism Acronyms...

Acronym : "a word (as NATO, radar, or laser) formed from the initial letter or letters of each of the successive parts or major parts of a compound term; also : an abbreviation (as FBI) formed from initial letters"          online Merriam-Webster's Dictionary               http://www.merriam-webster.com/dictionary/acronym

The world is filled with acronyms. Some bring a smile to your face...   T.G.I.F. (Thank God It's Friday) - some, not so... looked forward to...    I.R.S. (Internal Revenue Service). Everywhere you go there seems to be an acronym for everything. I have to admit, I've never come across so many acronyms as I have since I learned about autism. There is an acronym for almost anything dealing with the spectrum. Many have a positive meaning, others not so much. These are the adjectives I use to describe my boys and others with Autism Spectrum Disorders (ASD). When I look at our boys, truly look at them, I see all of the adjectives listed:

Astonishing, Unquenchable, Tenacious, Intelligent, Sensational, Magnificent

Super, Priceless, Excellent, Commendable, Thorough, Real, Unyielding, Methodical

Dedicated, Incredible, Surprising, Overt, Resolute, Detailed, Exact, Riveted

For the past 3½ plus years (since diagnosis) we've been dealing with autism issues. I have done so much research on autism and the things that accompany it. I still research something almost every day, that has to do with autism in one way or another - and I'm still overwhelmed by all the information that is out there to sift through. I'm also very disappointed in how hard it is, in many places, to get the proper diagnosis early on. Especially since early intervention is so important in helping autistic kiddos. With everything I've learned so far, I've come to realize that we have actually been dealing with ASD for the past 5 years now. Only we didn't realize it and those around us didn't know that they were particularly autistic behaviors. They just thought it was just particular to the boys start in life.  In all that time, we have had to learn virtually everything on our own or through others who are dealing with someone on the spectrum too. We have a great pediatrician, but he and other pediatricians still don't seem to be... well... very informed about autism. Luckily they do seem to be informed about some things that can go with autism:

A.B.C. - Autism Behavior Checklist          D.S.M. - Diagnostic and Statistical Manual          O.C.D. - Obsessive Compulsive Disorder
A.D.D. - Attention Deficit Disorder          A.D.H.D. - Attention Deficit Disorder       O.D.D. - Oppositional Defiant Disorder
O.T. - Occupational Therapy          P.T. - Physical Therapy          S.I. - Sensory Integration          T.S. - Tourette Syndrome
A.S.L. - American Sign Language          D.D. - Developmental Disabilities

I am not speaking about all pediatricians, I am simply making a general statement based on my experience and that of others I've talked to. We've been blessed with a great pediatrician and nurses who have helped us go in the direction we needed to. The other parents of autistic kiddos are also a great source of information, maybe even the best source.There is a whole language all it's own with ASD, a lot of acronyms and other terms which you may never hear in your life time unless you are associated with the world of autism. A few more acronyms like:

A.B.A. - Applied Behavior Analysis          A.D.O.S. - Autism Diagnostic Observation Scale          A.I.T. - Autism Integration Training
A.S. - Asperger's Syndrome          M-C.H.A.T. - Modified Checklist for Autism in Toddler's          D.T.T. - Discreet Trial Training (or Therapy)

These are only the tip of the iceberg, like I said previously, autism has a language all it's own. The acronym's can make you crazy some days, and others they can make you laugh. For example, when you know a bunch of acronym's and someone asks you a question (and the answer's an acronym) good luck saying the right one the first time. :P

From a mother's heart - Communication - regardless of how it's done is what's most important - especially when it's communication with love.

Summer's Coming...

Well, the 2012 - 2013 school year is almost over. The boys will finish out this school year in the next few weeks. The PALS (Program for the Acquisition of Language and Social skills)* will be over, Kindergarten will be behind us and we will be looking forward to summer. So, in between getting sprayed with the hose...

and exploring...

and running errands and going for walks with daddy...

We will settle into a summer routine of Monday thru Friday - ABA for 4 hours a day.

Then, in the fall, when the new school year begins...

The boys will begin the 1st grade... in a new school... with a new teacher... new IA's (Instructional Assistants)... and new peers. They will begin the EIAP class (Elementary Intensive Autism Program). But that is for autumn, when it's time to begin school again.

Let the summer will be fun and busy, and I'm sure we'll learn a lot of new things to share.

From a mother's heart- bring on summer with all the ups and downs, twists and turns. May we all enjoy some extra time with the kiddos.


.
*PALS is an acronym that seems to have different meanings indifferent places. For instance, I've seen it called Pacific Autism Learning Service(s) as well as others.

Immunizations... Yes or No?

I am not here to persuade one way or the other with regard to immunizations. That being said...

Wouldn't it be great to have an easy way to look for answers that directly relate to your specific issue? You can plug issues into the computer all day long and still not find what you need. Especially if you don't have at least some idea of what to call what you're looking for.  In the world of autism there are so many different issues that can be linked to a particular situation, but they are largely scattered when you try to look for them. Autism sites are great with the information they provide, but they don't always get right to the topic you need. For instance, look up hyper instead of ADHD; or unable to concentrate or focus, instead of ADD. You will find so much information, but unless you direct your search to a specific topic, you won't usually find the topic you want very quickly.

Once you figure out how to word what you're looking for, you generally find so much information, you're not always sure what to believe. There is so much information about so many topics, that you can find almost anything on it, but it's up to you to decide what is real and what isn't. Then you must decide what you believe and what you don't. How to use the information you've found and if it applies to your situation.

One of the greatest debates regarding autism began on February 28, 1998 when a Andrew Wakefield published a paper in a general Medical Journal. The Lancet printed an article in which they linked immunizations and autism. The article said that there was a study done which showed a link between the MMR immunization and autism. This study / article was found to be fraudulent, the data had been faked. Every aspect of the "study" was a lie. The doctor who headed the study was discredited. The journal even printed a retraction, but the damage was done.

http://www.popsci.com/science/article/2011-01/british-doctor-faked-data-linking-vaccines-autism-and-hoped-profit-it

Since the controversial article, unfortunately and not surprisingly, thousands have avoided the vaccine out of fear. Studies are continually being done which are disproving any link between any immunizations and autism. The next question about vaccines and autism that has come up is whether too many vaccines at one time could cause autism. So far the answer to that question is: there is no evidence at this time that this is true. A question arose about Thimerosal (a mercury containing compound) which had been included in some vaccines to protect against bacteria and fungus growth. There has been nothing that proves this as a link to autism at this time.

http://pediatrics.aappublications.org/content/111/3/674.short#

Since the article first came out, many countries have done their own research to determine if this could, in fact, be true. Studies done in the United States and Europe have found no link between MMR and autism. Many independent scientists have been organized by the American Academy of Pediatrics (AAP) and the Institute of Medicine – "they all concluded that there is no association between MMR and autism".

http://www2.aap.org/immunization/families/mmr.html

It is believed that since the MMR vaccine is given between 12 - 15 months and for many with ASD the first signs of autism seem to appear between 15 - 18 months, there may be a connection. Still, there has not been a scientific evidence that there is any link between the two.

The National Autism Association believes there may be a link between the two. Since we still don't know the cause of autism and it is believed that genetics, environmental and other factors play a part, they also think that more research needs to be done.

http://nationalautismassociation.org/about-autism/causes-of-autism/

The bottom line: it is and should remain up to the parent to educate themselves and decide what is right for their family. It is a touchy subject for many parents out there. I believe there is still a lot more studies that need to be done. We need to support one another in any way we can not try to make other people believe what we believe.

From a mother's heart - share information and encourage research. That way we can make informed decisions and hopefully one day we will see a world without autism.

Sensory Processing Disorder...

After a nice vacation at Disneyland for the last week, we are all glad to be home. We had to postpone this vacation until last week. It was so much busier than we are use to. We did have a pretty good time all in all...

However, it was busier than it's ever been (when we've gone on vacation, that is) so it also gave us more insight into sensory processing, or sensory processing disorder I should say. Sensory processing or sensory integration, is the way the nervous system receives messages from the senses. It then turns the messages into the appropriate motor or behavioral response. Biting into food, riding on a ride, watching a movie or reading, in order to finish these things, you require proper processing sensation or sensory integration.

Disneyland is a great place for engaging all the senses. However, if you have a sense or senses that are under or over-reactive to sensory stimuli, this can be a problem.  Sensory Processing Disorder affects all types of people, not just those with autism. Though many with ASD (Autism Spectrum Disorder) do have sensory issues of one or more senses. According to webmd.com, many children with autism or other developmental disabilities, often have Sensory Processing Disorder (SPD). "Children with sensory processing disorder cannot properly process sensory stimulation from the outside world."  We have known for a long time that the boys have sensory issues, but have only recently stumbled onto what it's called. Now, they will be referred for an assessment for SPD.

Some symptoms of Sensory Processing Disorder include: constant motion or fatigue (or go between the two); issues with texture or feel of certain foods; cannot wear certain fabrics; over sensitive to odors, sounds or lights; jump, swing, spin excessively; etc. One of the first things we noticed with Daniel was that he could spin around for what seemed like forever, and never seemed to get dizzy. I have now learned that the reason for this is SPD.

During a "flapping" episode: 

After anxiety outburst - pressure/compression vests did the trick

SPD can be diagnosed by a physician, occupational or physical therapist. What I've found so far however, is many doctors who are not fully versed on SPD. We have been referred by many others to have an occupational therapist evaluate for diagnosis. It can be treated with sensory integration therapy which will focus on challenging a child's sensory input. The therapist will help the kiddo by assessing their needs, introducing stimuli and teaching him/her how to properly respond. Sensory integration therapy is believed to (possibly) help reduce other problem behavior, though it hasn't been any study done on this as of yet.

The world of autism is complicated enough, and as parents we seem to have to do most of the work in getting information on well, anything. Not that I'm complaining, well, I guess I kind of am, but (please indulge me for a moment) I love this comedian Jeff Foxworthy and he does this bit about "You might be a redneck if:" It makes me think there should be a checklist for us parents kinda like his bit:

Does your child act a certain way... (s)he might have autism.           Does your child have problems with certain materials.... (s)he might has Sensory Processing Problems
Does your child get more hyper than most other children... (s)he might have ADHD. 

The list of questions could go on forever, but I think you get what I'm trying to say. I wish I'd found out about SPD a long time ago, but when I mentioned the issues our boys have, it always came back to "autism".  There's definitely another blog on this topic, but for now, some great websites to learn more about SPD include:

         http://www.sensoryprocessing.com/          http://classes.kumc.edu/sah/resources/sensory_processing/learning_opportunities/concepts/sp_concepts_main.htm
http://www.spdfoundation.net/about-sensory-processing-disorder.html          http://www.sensory-processing-disorder.com/          http://www.sensoryprocessing.info/

That's why I am writing this blog, to hopefully put out more information on different topics dealing with autism, in one place.

From a mother's heart - I'd love feedback too. Any autism topic suggestions, comments or information that you think others might like to know. You can also check out https://www.facebook.com/AutismParentsUsa?fref=ts    (Facebook page for parents in the USA or other places too) I'm always looking for ways for us to all communicate about what we've learned.

For Mom's Everywhere - Happy Mother's Day!

For Mother's Day - and just back from vacation - I wanted to dedicate today's blog to mom's everywhere with a poem I wrote many years before I became one.

FOR ALL MOMS EVERYWHERE – THANK YOU!!!

For all the diapers you have changed,
All the “boo-boo’s” you have kissed.
For all the schedules rearranged,
And every “day-off” you have missed.
For all the times you’ve been asked “why”,
Every answer you have given.
For every time you made me try,
All the “no-no’s” you’ve forgiven.
For every time you’d want to scream,
But held your tongue instead.
For teaching it’s o.k. to dream,
For loving kisses before bed.
For putting your own life on hold,
To make sure I grow up right,
For waking me in the morning,
And tucking me in every night.
For all your love and tenderness,
…for everything you do.
These words alone do not express,
The deepest, heart-felt… THANK-YOU!!!

lmab 5/2001

From a mother's heart - have a wonderful day!!!

Stimming

Every time I watch my twins working with their ABA - BI's (Applied Behavior Analysis - Behavior Instructors) I see something new. Not necessarily something new that they are doing, but, maybe something that I haven't noticed before. Today I noticed that they have certain "tells" about what their next action will be - like a poker player that can't hide when (s)he has a great or awful hand. When Daniel is all done working (whether it's the end of his session or not) he will begin to look at everything but his table, and he'll try to make his instructor laugh. He'll also start start looking out of the sides of his eyes - or display another stimming behavior, or just get silly. If he's tired, not feeling well or hungry, he'll begin to act out or cry and become more aggressive.

Anthony will start staring at his hands, or staring at the table when he's decided he's had enough (whether he's tired, doesn't want to work or just thinks he should be done). Then he will try to ignore his instructor. If those things don't work, he'll try to escape from the table and get them to chase him down. If he's hungry, he will get begin to get aggressive.

Our ABA - BI's are excellent in the way that they deal with the boys... less than stellar... behaviors. I'm very pleased with their training, patience and skill with re-directing when needed.

Other behaviors the boys exhibit are the same as many other kiddos on the spectrum, and are called "stimming". Stimming is short for "self-stimulating" behavior, and believe it or not, every one stims at some point. Most neurotypical kids (those without ASD) are stimming when they: suck their thumb, bite their nails, tap their pencil, twirl their hair, etc. People with ASD (Autistic Spectrum Disorder) will have different stims depending on the "input" they need. Some have: oral fixations (they are constantly chewing on things), hand flapping, spinning objects, door / cabinet slamming, walking on tip toes, etc. Unlike other behaviors, stimming is generally an unconscious (or subconscious) action on the part of the one doing it.

Some people will try to stop an autistic child from "stimming" behaviors or redirect to another behavior, unfortunately, you can't always predict what behavior they will "pick up" to take it's place. So, you have to ask yourself whether the "behavior" you're trying to stop will be replaced by better one, or...  something worse. Most stimming behavior is a coping mechanism for one thing or other. Many children on the spectrum, from PDD-NOS (pervasive developmental disorder) to Asperger's Syndrome, seem to stim more when they are: over or under stimulated; reacting to pain in the body somewhere; trying to manage their emotions; or simply need a calming or soothing. Another main reason for stimming can be "Sensory Processing Disorder", but that's a blog for another day. There are other reasons for stimming, I'm sure, but these are the main reasons I've been able to verify. Not only from my observations, but also from researching online.

Living with kiddos on the spectrum gives you a unique perspective of human nature. It's a very interesting process - learning about the the different aspects of the autism spectrum. You really do learn something new every day. The funny thing is that with all the "stimming", breakdowns or meltdowns they may have, you realize that in most cases other people wouldn't even have a clue that a kiddo is autistic without getting to know them. So, if you do see a child displaying an "odd" behavior, throwing a "tantrum" or some other behavior that may be generally "unacceptable", just try to remember - you never know why the behavior is occurring.

From a mother's heart - Don't frown, don't judge, offer to help or politely smile and walk away.