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Archive for December, 2014

Imagine being the parent of an autistic child and traveling to visit a relative for the holidays.  It should be a fun and celebratory time.  In one case that just happened Christmas Eve, it turned into a nightmare.  A young boy, age 4, went with his family to South Carolina to visit his Grandma for the Christmas holiday.  According to news reports, on Christmas Eve, the mother left him with his Grandma while she made a trip to the store.  What happened next is a scenario that many parents of autistics  can relate to.  Grandma turned her back for a moment and the boy disappeared from the home.  Many searched for him but unfortunately, there was not to be a happy ending.  The boy was found drowned in a pond near the Grandma’s home.

This heartbreaking story brings to light one of the dangers of autism….wandering.  According to the National Autism Association website, 48% of children with Autism or an ASD will wander.  This is a rate 4 times as high as children who do not have an ASD. Here are some more alarming statistics from their website.

In 2009, 2010, and 2011, accidental drownings accounted for 91% of the deaths of ASD children under the age of 14 years.

More than 1/3 of the ASD children who wander are rarely/never able to communicate their name, address, or phone number.

32% of ASD parents report “close call” with possible drowning.

2 out of 3 parents reported their missing children had a “close call” with a traffic injury.

Children with ASD are 8 times more likely to wander between the ages of 7-10 than their typically-developing siblings.

 

This is why organizations like Firefighters vs Autism exists.  The following is an excerpt from their website.

Firefighters vs. Autism was organized exclusively to educate the community about the dangers of wandering and drowning that are prevalent among those within the Autism Spectrum Disorder (ASD). We are firefighters, family members and friends who are primarily engaged in educating first responders, the community, as well as the parents of children with Autism, for the purpose of preventing wandering and drowning among individuals with ASD.  Our primary purpose is to provide workshops for first responders in order to educate them on the dangers of wandering and drowning as well as to provide opportunities for families, friends and/or caregivers to learn about what they can do to prevent these tragedies from happening.  Firefighters vs Autism provides information to the community in general on the dangers that individuals with Autism could face.

 Through various fund raising events and merchandise sales, we are able to host workshops for first responders and care givers, provide swim lesson and drowning awareness opportunities to families impacted by Autism, pool fencing to families who cannot otherwise afford it, and community wandering awareness seminars as well as therapy events for those effected by Autism. We also provide education and/or counseling for those families dealing with an individual with Autism.
We are currently operating out of Tucson and southern Arizona but hope to expand into other communities across the nation. We also plan on donating to other 501C3’s that share in our organizations mission.

 

Firefighters vs Autism is trying to get the word out out to families and caregivers on how to help prevent these tragedies.  Only 50% of families being taught about the steps that can be taken to minimize the risks, they are spearheading the movement to educate those who are in need of the information.  They are currently based out of Tuscon area, but are always willing to help other fire responders across the nation to get the training they need to continue the work.

Another area which they are taking head on is the mistaken idea that the autistic children wander off due to lack of good supervision of parenting.  Consider this, if you are a parent or caregiver of any child, are you actively supervising them every minute of the day and night?  What about when you are switching loads of laundry in the machines?  What about when you have to take a shower or use the toilet?  Are you watching the child at that very moment?  What about when you are asleep?  What about when you are cooking a meal?  Unless you have the child physically at our side every moment of every day, you cannot answer “yes” to any of these questions.  Given those situations, in order to be physically watching over your child every moment, you would not even be able to shower or use the toilet without the child in the bathroom/shower with you.  Even then, in a shower you have your eyes closed and attention diverted when you rinse the shampoo from your hair.  Get the point I am trying to make?

Unfortunately, there are communities that still have the belief that ASD children wander due to a lack of proper supervision or because of bad parenting.  This is a major problem.  It is hard to get past that attitude.  I happen to live in a rural area with just that way of thinking.  There is little true education about the risks that ASD children face and honestly, I feel that many of the first responders leadership really cares to change their opinion.  It is up to us, as parents to start making the changes.  We first need to educate ourselves.  We cannot say we are doing all that we can until we have explored all the possibilities.  It can be as simple as installing door chimes to alert us when the doors of the house are opened.  We can fence our pools or yard.  Fencing the yard is especially important if you have a pond or other waterway near your home that would attract your ASD child.  Next, we need to educate our families, friends and neighbors as to the dangers that our children face.  They need to be aware so that they can assist if ever necessary.  If your child has a babysitter, they need to be educated on the safety guidelines that your child requires.  The local first responders need to be given the facts and information as well so that if the worst should happen, they are prepared to help effectively.

If you are interested in learning what you can do to educate yourself or others about wandering and the safety risks that a child with an ASD face, contact Firefighters vs Autism or check out the National Autism Association website for resource information.  The information you learn can help to lower the risks and possibly save a life.

 

 

 

 

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I want to get a bit real today.  Often, people who are not around those with autism have no clue on how the journey goes.  Granted, each family and individual are on their own personal journey.  This blog is just about our own family’s travels along the path called autism.

One of the issues that we deal with on a somewhat regular basis is having to decide if some of Pookie’s developmental delays are truly a delay, a habit, or him simply being stubborn.  Let’s face it.  If he has someone doing tasks for him on a regular basis, why would he want to change that?  So, here is a typical challenge that we deal with.

Pookie used to be able to feed himself both finger foods.  He had also begun using a spoon completely on his own.  One funny story that I can share is when he would go into the pantry, grab up a jar of peanut butter, remove the lid and go get a spoon to eat the peanut butter with.  He actually would sneak into the pantry to do this.  I would hear him in the kitchen and find him scooping out spoons of peanut butter to feed to himself.  Considering that he didn’t eat much meat at the time, I didn’t mind him doing this.  I kept one jar that was exclusively for him on a pantry shelf he could easily reach.

Suddenly, about 1.5 years ago, he got sick with a fever that lasted a full week.  The doctor couldn’t explain it other than to say she thought it might be a virus.  She had no definitive answer though.  When he recovered from that fever, Pookie had regressed.  He no longer was able to feed himself.  We were back to square one.  He wasn’t even able to feed himself finger foods.  It was like having a young baby again who needed you to feed them and help hold their sippy cup in order to drink.  Unfortunately, regressions in autistic children are often like this.  Your child can have some skills in an area that suddenly disappear and set you back to square one.  A fear that parents often face is that there is always a chance that the skill will never return.

So, here we are 1.5 years later.  Pookie is able to drink from a cup if it has a sports bottle type of spout.  He feeds himself finger foods and is using a spoon or fork.  What is the downside of this?  He refuses to drink or eat completely on his own.  Let me explain.  He will bring his sports bottle to me and set it down beside me.  He then waits until I tell him to drink it.  Then he picks it up and drinks from the sports bottle.  If he has to stop and take a breath while drinking, he sets the sports bottle down and we have to go through the entire routine all over again for him to take another drink. In feeding himself, he is able to eat most things on his own,  The only exception being a brothy soup or other liquidy food.  The strange part is that in order for him to pick up the food or his fork/spoon, he needs to feel you touch his shoulder or elbow.  We jokingly refer to this as touching his start button.  Lately, I have been looking at the situation and wondering how much of this is habit/routine and how much is that for some other reason he still needs the prompting?

This has got to be one of the hardest aspects of raising an autistic child.  It is especially challenging when you cannot talk to them and find out why they do things in their quirky way.  Pookie cannot express through speech or other communication method enough to tell us what is going on in this area.  We also are unable to explain in a way he understands that it is okay for him to eat and drink on his own.  That we want him to have that independence.

His OT has been helping in this where she can.  It has definitely been an interesting puzzle to figure out.  Over the past few days, Pookie has been making small improvements in his self-feeding.  We no longer have to be touching him from the time he picks up the utensil until the food is in his mouth.  Now, a simple light touch/tap to the shoulder will get him to eat a bite of his meal on his own.  We don’t have to keep our hand there.  We only have to give him a quick light touch to get him to eat.  We are fading out of that routine very gradually.

In the self-feeding and drinking area, we are finally making progress.  The question still comes to mind though.  Did he need that extra gesture from us due to habit or was there some other underlying need that he wanted fulfilled?

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It seems that lately I have been finding a lot of great book resources.  This one is a real gem.  I wish it had been around years ago when Pookie was first diagnosed.

autistics logistics

 Autistic Logistics, by Kate Wilde

Autistic Logistics is a new book set to be released in January, 2015. If there were ever a book that should be made available when a parent gets the autism diagnosis, this is it. The author is a Director of the Son-Rise Program. The ideas she presents in this book are based upon the Son-Rise methods.

As the parent of an autistic child, I can attest to the difficulty parents can have in teaching the basics of self-care to these precious children. Developmental skills, such as toilet training, can be a very difficult thing to help your child accomplish. Self-regulating their emotions to curb meltdowns and tantrums is another tough lesson to help the children learn. This book gives solid advice and examples of how to tackle the most basic of issues that parents of autistic children face.

Here is a summary of the book that was provided on Amazon,

Have you ever wished that your child with autism spectrum disorder (ASD) came with a manual? This book provides just that, offering clear, precise, step-by-step advice on everything you want to know, including:

– How to toilet train your child without pushing or pressuring
– How to get your child to sleep in their own bed and through the night
– What to do when your child tantrums, hits or bites
– How to introduce new foods, without a fight

Based on decades of experience, Kate Wilde tackles these day-to-day issues and more, using tried-and-tested techniques to help you transform the challenges of home life and create harmony. The unique approach featured in the book, which encourages you to support your child’s need for control rather than fight against it, can have transformative results. Not only will you learn to see through your child’s eyes and help your child in a way that honors his/her specialness, but you will also begin to free yourself from the pressure and discomfort that can so often accompany everyday challenges.

Catering to all age ranges and points on the spectrum, this book will be of immeasurable value to parents and caregivers of children with autism, other family members, as well as teachers and teaching assistants.

As I read through the book, I thought of just how timely it was for it to come to my notice at this time. Our own child is reaching that age when toilet training is being addressed. Using this one area as an example, let me say that this book has the most useful and detailed information that I have ever read. Ms. Wilde starts off by taking a look at poplar attitudes towards toilet training that are actually making the process harder. She then breaks down the reasons why some accepted methods do not work very well. One case in point being to place the child on the toilet every 30 or 60 minutes. The problem with that is you often have a child soil or wet their diaper in between trips to the toilet. This can become a frustration to both parent and child.

What she suggests is something that just makes sense. Keeping a diary of the times your child eats, drinks, and soils/wets their diapers. Start noting the time intervals and once you see a pattern, you can get the child to sit on the toilet prior to when they would normally go in their diapers. She goes further into the exact process, but it is a very good method to try out. It makes far more sense to me. Most people have a set routine, a body time clock. For some, they always have to go to the toilet 30 minutes after a meal. Going on that theory, if your child has a routine, you can get them to the toilet before that set time arrives. This greatly increases their chances for success in the toileting.

There are many other areas of development which are addressed in the book. Each are ones that we face often as parents of autistic children. While the child’s therapists can offer advice, the parents really need solid guidance at home as well. This is where the book comes in. The clear presentation of ideas is done in such a way that it is easy to implement in the home.

I strongly recommend this book to anyone who is a parent or caregiver of a person with autism. It is a book that I wish had been around when our son was first diagnosed.

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All About Me

All About Marvelous Me, by Becky Radtke

If you are looking for a fun way to get your kids to do journaling, here is a great option.  All About Marvelous Me is a 64-page book of fill in the blank pages that will inspire your kids’ creativity.  Each page is a new topic to write about. Here is a summary from Amazon’s website.

 Kids can have fun reflecting on their past, present, and future! Loaded with fun things to do, such as fill-in-the-blanks, checklists, drawing, and journaling, this 64-page book will inspire children to write and illustrate details of their daily lives and inner thoughts. Activities include taking personality quizzes, designing the ultimate hangout, imagining the perfect job, and many other interesting personal challenges.

This book is arranged in a fun format that even some of the most reluctant writers can find to be inspiring.  I love that it is set up in such a way that children who have difficulty with written expression will be able to manage the journaling very well.  Little Miss does not enjoy writing, yet this looks like a book she would have fun doing.

Definitely, this is one journal that I will be adding to Little Miss’ workboxes.

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Misconceptions About Autism

It seems that everywhere you turn, there are stories in the media, network and social, about the violent behaviors of autistic children. From school shootings, where the shooter was said to be on the Autism Spectrum, to television talk shows like Dr. Phil, you hear about this darker side to autism. But is it a fair summary of this disorder?

I get more than a bit uncomfortable when I hear people talk about autistic people being violent and needing to be put in a long term facility such as an institution. I understand that there are extreme cases where that option may be necessary. Honestly, I get that. But should people be judging ALL those with autism as being painted with the same brush? That is where the discord happens within my heart and soul.

Being the parent of a child with autism, I can give you a glimpse into our life. Autism is not for wimps. That is a certainty that anyone raising a child with autism can attest to. Our family has been blessed with a happy, sweet natured son who just happens to have Infantile Autism. Pookie has a full range of emotions, just like a typical child. The only real difference is that he has trouble expressing it. On most days, he is giggly and happy. Does he have a moment of anger? Absolutely! In his case though, we have learned to help him deal with it properly.

One good example of his anger is when he is frustrated. That is the most common trigger for anger with him. Once we taught him to communicate, he had far less outbursts. He never hits, kicks, or bites as some kids are described as doing. If he happens to be holding the item that frustrated him, he tossed it down. One time when this happened, he was playing on his Nabi Jr tablet. He was really enjoying the Nabi until the battery died. When the Nabi shut down, Pookie got frustrated and threw it onto the floor. That I could understand. He doesn’t have a grasp on the idea that the Nabi isn’t broken when the battery runs low. All he understands is that an activity he was enjoying is suddenly taken from him.

Often, we are able to circumvent the triggers that upset Pookie. One example being that I become more vigilant about keeping his battery operated toys charged up or have a supply of new batteries available at all times. When batteries need changed out, I have taught him to bring the item to me instead of getting upset. It took time, but was within his ability to learn.

We can go more than a week without any anger meltdowns. As of today, he hasn’t had one of those meltdowns in over 4 months. Does he get frustrated or irritated? Of course he does. But he isn’t violent about his anger.

The point that I am trying to convey is that not ALL autistic children grow up to be violent people. I know that it does occur in some cases, but there are so many other cases where the violence is not present. I am so tired of hearing people say, “Just you wait until he reaches puberty. Then you will see him go from being the happy kid to a hateful monster.” Yes, I actually had that said to me recently by another parent of an autistic child. It broke my heart to hear her refer to her own child as a hateful monster. I had to wonder if her child ever picked up on that. I know that Pookie is very tuned in to my moods. He is more apt to have a cranky day if I am having a bad day. If my day is going calmly, then his does as well. I can’t imagine what this lady’s attitude could be doing to her child.

When you hear the stories of out of control autistic children, listen with the understanding that you are only hearing about that one child. Consider it this way. Would you want society to be judging your child by the behavior of the juvenile delinquents you hear about on the news? Would you want others to talk about your child as though he/she was a drug addict or gang member just because they hear about so many kids who are in those categories? The media loves to showcase the extremes in anything. If the media were to be believed, nearly every child grows up to be in trouble with the law. But is that truly the case? Or are we only hearing about the ones who actually get into trouble? It is no different to those of us with children who have autism. Most of us do not have the problems with out of control kids. We are not saying that our children are completely perfect and never have a bad mood. We only want people to understand that the extreme stories you hear in the media, including social media, does not represent our autistic child.

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