Some Questions to Ask...

I've talked to several parents recently who are still fairly new to the "world of autism" - shoot, I'm still "new" at dealing with it too, even though I've been doing it for the past 4+ years. I don't think we ever truly become "experts" since things change daily. The only difference for me is that I am an "information freak", if I hear about something new about autism, I have to research it. Some of the most important questions we can ask (at least to me) are those for input from other parents and professionals that have/work with kiddos on the spectrum. We all need that input from others in similar situations, and not just from those who've dealt with it for a longer period than we have. Others want to know what questions to ask when looking for a/an:

• doctor; therapist / psychologist: gastroenterologist; occupational therapist;
• dentist
• vision / optometrist
• psychiatrist

*School & ABA (Applied Behavior Therapy)

Talk to other parents, teachers, etc. of ASD (autistic spectrum disorder) kiddos for referrals try to get several. Check your insurance for coverage - if you are able to use any of them, schedule a "1st visit" and ask your questions. If they won't answer your questions - move on.

Some are basic questions to ask anyone who will be teaching or caring for your child:

1. Do you currently have patients, students or clients with autism?
2. Are you aware of autism issues? i.e., autism aggression, SPD (sensory processing disorder), ADD/ADHD, seizures, gastrointestinal issues?
3. Are you aware of what ABA is? (you'd be surprised how many physicians aren't really sure of what it is.)
4. How do they feel about medications? (you don't want someone who will think you just have

Anything else that you think should be asked, or others have recommended you ask, do it. This is your loved one we are talking about. While asking the questions, watch the person's demeanor, how they are reacting to your child, do they seem to have a good bedside manner? Gentle? Understanding?

Next, if you find that "feels" like the right person, you should think seriously about using them - especially if they have your child's best interest at heart. Remember when you ask the questions, that just because a doctor doesn't have a child with autism in his/her practice, doesn't mean you shouldn't use them. You need to look for someone who says they will look into it if they don't know something. That way (as long as you listen to that inner voice) you may be the one to teach that doctor something. The key is to find someone who genuinely cares and is willing to learn and will truly care for your little one.

* The next topic is ABA and school - what questions I have learned to ask (again, take advice from other parents and ask any questions that you feel are relevant as well.

1. For school in particular: do you use an ABA based teaching method?     Do you mainstream? If so, how much time?      Do you deal with potty training (if relevant)?

For both:

1. What is your "mastering" criteria?                                                                                                                                               (This is the total number of correct answers a child will give for any program that will be expected before going to the new target)  For instance, many schools require around 80% accuracy. In other words, out of 5 times being asked something, if they get it right 4 times - usually 2 times in a row, the target will be considered "mastered" or "learned". (I feel that the minimum for "mastering" should be 100% - if you are sure the kiddo really "has it", I believe that moving the target to generalization is totally appropriate.
2. What process do you do you use?   There are:            ABA, PRT (Pivotal Response Training), Floortime or DIR (Developmental Individual Difference Relationship Model), RDI (Relationship Development Intervention), TEACCH (Training and Education of Autistic and Related Communication Handicapped Children), SCERTS (Social Communication / Emotional Regulation / Transactional Support)  [All of these are addressed and explained here:                                                                     http://www.autismspeaks.org/family-services/tool-kits/100-day-kit/treatments-therapies]
3. What type of trials do you use?                                                                                                                                                 There are: mass trials (ensures success of trial, then fades the prompts);   discreet trials: breaks down tasks into easier steps for learning. Again, ABC method is used and generally the steps are broken down into SD's (discriminative situations).                       For example: SD 1 might be- "put with xxx" (when mastered) an new target would be introduced.     SD 2 might be - "give me xxx"   SD 3 might be - "what is it?"             The third item is not "technically" a trial, (but I think it should be -   :P   ) - Generalization (this is asking the kiddo about something (s)he has already mastered in a generalized setting).

I've learned the best providers will use a variety of trials or SD's (discriminative situations) to make sure the children really understand the "whole" process / target. ABA incorporates the A.B.C. (antecedent - behavior - consequence) concept. The kiddo is asked or told to do something (antecedent), depending on the behavior (behavior) the child will receive a preferred item and "yes, that is xxx", "good job" etc. or "no, try again" with a non-preferred item as a reward for trying.

http://www.users.qwest.net/~tbharris/aba_train.htm

There are as many therapies as critics and supporters for them. Most of the data shows that any program that incorporates the ABA approach is the most beneficial.

From a mother's heart - I hope this is helpful. I'd love to hear of any questions you've thought of that I haven't addressed. It's always good to pass on information we learn. God Bless!

ABA Questions

ABA (Applied Behavior Analysis) - there have been many questions about what ABA it consists of; how long a session should last; how many sessions a day or week: and what time period should someone receive services for. After looking over the research, there is a lot of disagreement between what research recommends and most state agencies offer. They are not in agreement is most cases. Some state programs offer early intervention for 2 to 3 years, depending the child's progress, and most want to keep services at less than 25 to 30 hours per week. Also, there are a lot of states that want to "fade" services when kiddos turn 3 and to transition the child to the school system. The problem is that schools generally want to keep a child in the least restrictive environment, which can come into conflict with the child's actual needs.

ABA therapy has been used for autism since the 1960's. I've already written a history of ABA you can see the entry here: http://twinsmom08.livejournal.com/17439.html

In the time since it was put into practice there have been changes to create the most effective process. The research show that a minimum of 25 hours a week of ABA is best for young children each year. However, on average, young children who had 40 hours a week of ABA over the course of a minimum of 2 years, benefited the most.

http://appliedbehavioralstrategies.com/what-is-aba.html

The best ABA providers will observe the kiddo for their specific needs. Then design a program with known criteria and "fine tunes" it to work best for that child. Since each child is different, they need motivators which help them to work, also different styles and personalities when it comes to a behavior instructor. A good behavior instructor will learn how to motivate the kiddo and get the best response from them. They will require no less than 100% compliance to "master" something, and then do generalization to make sure the kiddo really has what they've learned.

An ABA session should last 1½ to 2 hours, sometimes longer, depending on what the kiddo can handle. Some kiddos on the spectrum need more than one session per day. Just remember to watch and learn what you can to help you kiddo to learn, keep up with the ABA procedures "after hours". You can break through if you keep with it, that's how you find what works best to teach any form of communication you kiddo needs.

From a mother's heart - regardless of which "end of the spectrum" you kiddo falls on, I truly believe that ABA will be a benefit. Fight for your little ones for any service that is beneficial for them. Never give up.

More Sensory Processing Information

When I began writing about SPD (sensory processing disorder), the only things I was able to find was article by researches, scientists and neurologists. That's not to say others have written on it, or even explained it. I just finding what I was looking for - maybe typing the wrong thing into the search bar. Now, I'm beginning to see a lot more information, and am so glad the word is getting out. Hopefully it's getting out to the people who need the information the most - the parents and caregivers of those with ASD (autistic spectrum disorder).

When I first heard of SPD, I had know idea of the scope, or that there are actually different types. Like ASD, there are actually (what I call) sub-categories that make up SPD. There are many stereotypical people with SPD, you just don't usually hear about it. But I haven't heard of anyone yet, who is on the spectrum that isn't affected by some type of SPD. We actually see it happen in our home every day at some time with the boys. Whether it's a meltdown, some form of stimming, getting up an running. We have to take measures to help alleviate the different stimuli that they are feeling.

I've found that there are many different things that can be diagnosed as SPD or SID (sensory integration disorder). Some names and meanings have changed over the years, and will probably continue to do so as more more information is learned. There are medical and research-based facts, and also theories that have yet to be proved or disproved. The following all apply in some way to sensory issues:

• Sensory Integration Disorder
• Sensory Processing Disorder
• Sensory Modulation Dysfunction
• Dysfunction of Sensory Integration
• Somatosensory Dysfunction
• Threshold to Response
• Tactile Defensiveness
• Gravitational Insecurity
• Dyspraxia
• Somatodyspraxia

This information is explained further here:  http://school-ot.com/Sensory%20101.html#top

I found this information very helpful, this and other articles anyway. It's at least given me the ability to begin to understand a little more of what our kiddos are going through. I hope this will help you too. I'm sure I'll revisit SPD again, especially since I've learned that it plays a very BIG role for kiddos on the spectrum.

From a mother's heart - hopefully in the near future more people will know about SPD. We will also be able to see the signs quicker. By doing this, maybe we can help our kiddos to get what they need faster.

Sensory Deprivation

There are times when we all need to get away from it all, to be completely removed from a situation. For many of us we just need to get away - literally. We might go for a walk, a bicycle ride or even a drive. Some might go outside and read or listen to music. BUT... if you have autism, it's a whole different story. By observation and research, I have come to realize that most of the time, when someone with ASD (autistic spectrum disorder) has a meltdown or episode, they can't escape what's bothering them, it usually comes from the inside. Generally it seems to come from some form of overload or frustration. So they have to find a getaway that works for them. What seems to help is...

Sensory deprivation - n.   Deprivation of external sensory stimulation, as by prolonged isolation.

I've watched my boys (and am slowly learning how to help them) do whatever they can to create their own form of sensory reduction. When a meltdown or episode occurs, I've found it's from feeling the "jitters" or some form of internal turmoil, maybe begun from frustration. The first thing we try is is a vest - for us a weighted and compression vest works best. Daniel has found that going into a small closet by himself works. Or when he's having a bath, at least once if not more, he will lay on his back so the water covers his ears. A HUGE smile comes over his face, and you can tell that he's one of his favorite places.

For Anthony, he will look for a blanket to pull up over him, and usually falls asleep. Then there's a bunch of pillows or a bean bag chair, he'll bury himself in it, or he'll find some fabric (whether a curtain or a sheet) and wrap it around himself and stay there for a while. Then there's the weighted compression vest. I've noticed that Daniel seems to seek as much sensory blocking as he can get, where Anthony prefers the squeezing, tight - but open areas. We have recently found that noise reduction headphones (or earmuffs) work very well also.

When it comes to sensory needs, it takes every kind of approach you can think of. Take a hint from your little one. They will give you clues, the hard part is deciphering them. I know that I've missed several clues over the last few years, but persistence will pay off. Keep trying new things until you find what comforts your little ones enough to break through the breakdowns.

From a mother's heart - keep focusing on your little ones, learn to read their signs. Let them lead you. God bless!

Rebirth

I have a few "passions" that I try spend time on/with whenever I can. I absolutely love: God, my family, writing, taking pictures, and getting the word out about autism. This past weekend we decided to go for a drive in the foothills. We live in the state of California. Not the Hollywood or Beverly Hills, California you see on television. We are in the hot, dry, more smog than greenery - California. These are not complaints (though we could do without the bad air) I love the weather, having things to do close by, etc. We are about an hour away from the mountains where we can go to see trees, grass, animals and even snow in the winter. It's a huge difference from the city.

While we were in the foothills I was able to take pictures while my husband drove. I began to notice a lot of contradictions in the scenery. Old buildings (mostly barns) falling apart with new buildings not far away. Dead trees with new growth coming out of them. You can see the "rebirth" of the land from previous fires where new growth has begun. You see old styles of homes along with new. You see old farming equipment and new machines.

Looking at this beautiful scenery made me realize that we live with contradiction every day. Especially when you have a child with autism. For those with children who have "regressed" you've seen your child grow and learn, seemingly "normal" - and then all of a sudden stop progressing. They seem to have lost everything they'd learned before. You watch your child(ren) struggle, helplessly trying to figure out what's going on. All the while seeing that little "spark" in their eye - knowing they are trapped inside, waiting to breakout of their prison.

For those who have dedicated people that provide services and schools to give help they need, you get to watch the "rebirth" of your child(ren). You may watch ABA (applied behavior analysis) slowly teach your child to focus on things, start identifying things they "really do still know". Then maybe the school begins to teach things that are either new or "bring out the knowledge" that's locked inside.

When kiddos on the spectrum are given the opportunity, you will see a "rebirth" take place. They have a certain quality that reminds you of when they were just babies. So innocent and ready to take on the world. Only now, they really are preparing to take on the world. They are now ready to interact with it, but remember, they have so much more of a roadblock that stereotypical kiddos do. Everything new they have to learn creates a new door they must learn how to open and walk through.

From a mother's heart - remember that for every thing there is a season. A time to weep and a time to laugh. A time to tear down and a time to build.  A time for rebirth...

Facts and Statistics

Autism is one of the fastest growing disorders in the USA right now.

The following facts and statistics apply to ASD (autistic spectrum disorder) based on several different reports (most links noted below):

• There has been a 78 % increase in ASDs over the last decade
• 1 in every 54 boys will have autism (probably more at this point)
• 4 - 5 boys to every 1 girl are currently diagnosed with ASD (depending on the study you see)
• Current study by CDC (phone survey based) shows 1 in 50 are diagnosed with autism
• The fastest growing developmental disability in the US
• Occurs in all racial and ethnic groups (no one is immune)
• Autism is a serious life-long condition - can even be debilitating
• affects not only the person with it, but the whole family
• Up to 40 % of children with autism are bullied at school (possibly more)
• You usually can't tell just by looking at someone that they have autistic spectrum disorder

, CDC

There are more statistics, but I think these are enough to encourage anyone to learn about and spread the word regarding autism. Too many people are still in denial when it comes to their own children possibly having autism or any other disorders. They may take to long to get help for their children which only makes it harder for the child to "catch up". Others seem to think that there is nothing they can do, that it's too late for them to do anything. Fortunately, even though early intervention is best, intervention at any time can be beneficial.

There is new research being done all the time and the more information we find out the better chance of finding a cure, or a prevention.

From a mother's heart - take the time to let someone know the statistics and signs of autism, it may help someone get the services they need - sooner than later.





http://www.autism-society.org/about-autism/facts-and-statistics.html
http://www.cdc.gov/nchs/data/nhsr/nhsr065.pdf
http://www.autismspeaks.org/what-autism/facts-about-autism
http://www.mayoclinic.com/health/autism/DS00348/DSECTION=causes
http://www.nydailynews.com/life-style/health/50-american-kids-autism-latest-figures-article-1.1302872
http://www.autism.org.uk/about-autism/myths-facts-and-statistics/some-facts-and-statistics.aspx

Known Causes and Risk Factors

I have been asked what I know about the causes of autism. The first response I give... "not very much." Then I explain that there is still a lot of research needed. There are new theories almost every day about the causes of autism. Most of the data I've found so far shows that the most likely culprits include:

• Genetics 
• Environmental Factors
• Mother's health during pregnancy
• Some drugs taken during pregnancy have been linked to a higher risk of ASD (autism spectrum disorder) valproic acid and thalidomide have been linked with a higher risk of ASDs.
• Autism tends to occur more often with other neurological disorders
• premature and low birth weight has been linked to autism as well

http://www.cdc.gov/ncbddd/autism/research.html
http://www.mayoclinic.com/health/autism/DS00348/DSECTION=causes

Last year we hear about obesity, type 2 diabetes and gestational diabetes being linked to having a child with ASD. It is believed that they are linked to but are not believed to be a true "cause" of autism. Advanced age of the parent, especially the father is a known risk factor, as well as the mother's health prior to pregnancy.

http://www.autismspeaks.org/blog/2012/04/13/perspective-maternal-obesity-autism

News reports constantly update us when they find or identify any potential cause of autism now, especially since the word is getting out more and more. It is a blessing to have wonderful celebrities like Holly Robinson Peete, Dan Marino and Jacqueline Laurita speak out about their kiddos who are on the spectrum.

From a mother's heart - I know there are other factors, but I have chosen the ones that I have found the most data on.

The "Sick" Time of Year

You can generally tell the "time" of the (school) year by watching the children going to and from school. Their facial expressions speak volumes. The look has gone from the "apprehensive first day" to the "happy to see my friends" face. Now, only two weeks into the school year, those "happy" faces are changing again. It is already "sharing" time... sharing colds and viruses that is. It's kind of interesting watching how the kiddos respond to not feeling well.

As a stereotypical person, you can generally tell how someone is feeling by looking at them. Even if the person won't say "how they feel", it generally shows on their face. You can tell if someone is having a good or bad day, if they are sick - there are usually signs, etc. Many of the kiddos on the spectrum can't usually tell by looking at others how they feel, and lately I've noticed you can't always "read" their (kiddos with ASD) emotions either.

Many stereotypical kiddos seem to want to make sure others know they don't feel well. (I'm not judging whether a child is sick or not, just making general observations). They let you know they're upset for having to go to school; they make sure you know they'd rather be home. Then there are those kiddos who want to be in school regardless of not feeling well. Those are the ones the parent keeps asking "are you sure you feel well enough for school?"

A lot of the little ones on the spectrum have a way of keeping that "toddler mentality" when they aren't feeling well. Those kiddos will work or play to the best of their ability, no matter how they feel. They will continue on until their bodies say "enough!", then... some may meltdown, others will simply fall asleep. I've watched my own boys doing ABA (applied behavior analysis) - they are working hard one minute, and completely sound asleep the next.

Then you do what you would do for any child who is sick: nurture, love and do your best to help them get better. Also, remember that a child should not go to school if they have a fever - there's more of a chance of getting others sick. Then the illness spreads all over again.

From a mother's heart - May all your children have a good school year! I pray that they will all grow, learn and be exceptionally healthy this year!!!
God Bless!