Sleep Issues and Developmental Disorders

Many parents of children with autism and other developmental disorders are struggling with sleep every night.  There is such complexity in the challenges involved with falling and staying asleep that it is hard to touch on each aspect.  Often unintended patterns and routines are started that can be even more counteractive to establishing and maintaining sleep.  Sleep hygiene is a term often used to refer to the behaviors and elements in the environment to assist with a good night sleep.

What to do to improve sleep hygiene (especially with children):

• Lights Out  The power of a dark room is often underestimated.  Some children/adults cannot even use a nightlight or alarm clocks with bright displays  Also, room darkening shades can assist in eliminating additional light.  Our bodies naturally react to darkness to set the stage for sleep so help it as much as possible. 
• Wind down  It is important to start slowing our body down as we get closer to bedtime.  How often (especially with children) do we unintentionally rev them up instead of relaxing them?  Tickle games, hide and go seek, wrestling, and overall silliness are fun in the evenings with the kiddos but may not help in getting to sleep. 
• Keep the same bed and wake time  On the weekends especially, we are likely to be more lax on the time we and our kids go to bed.  Our bodies adapt to specific times for going to sleep and waking.  When we adjust the time to bed or to wake it can throw things off for quite a while so, try to keep those times as consistent as possible. 
• Caffeine  The effects of caffeine can stay in an adults system for up to 6 hours and a child's for 12 hours!  Keep this in mind with not only beverages but also chocolate.  That 'Hershey's' bar after dinner may interfere more than you think with going to bed. 
• Go to bed sleepy  Make sure that the individual is sleepy before going to the bed.  Using calming down activities such as taking a bath, reading a story, listening to soft music, and/or deep breathing.  This helps the body associate the bed with sleeping only.
• Remove distractions  Turn off or remove the television, toys, video games, etc.  Having these items in the bedroom can make it challenging to focus on sleeping.  As a society, television has become a staple for every room in the house.  This activity however, can bring the individual to a level of alertness that is not conducive to sleep.
• Self-soothing  During sleep, the brain goes through many cycles of alertness.  Many times, we have some general awareness in the night but fall back to sleep.  If a child is used to falling asleep on the couch (then moved), rocked by a parent or in the presence of someone else this makes it challenging later in the night.  When the individual wakes in the night, the experience is different than how they went asleep (the person is not there or they are in a different location).  This can cause full alertness in the night and difficulties going back to sleep.  Work on the individual falling asleep alone, in their own bed, to help with nighttime wakings. 
• Do not talk/engage during nighttime wakings  In the middle of the night, try not to talk or engage the individual but lead them back to their bed; multiple times if necessary.  One suggestion of Dr. Patrick Friman, was to put a door chime on the doorway.  This helps to alert the parent immediately when the child leaves the room so that they don't get the bed with the parent and establish a new routine. 
• Consult your doctor  Medication should be seen as a last resort but is many times needed especially for those individuals on the spectrum.  There are more 'natural' options that have worked well for many children with sleep disorders or overall difficulties but do not start medications without consulting your doctor!  Autism Speaks has a great article on melatonin; there have been great results with this supplement and improving sleep.  There are also increasing studies on the effects of the now available CR (control released) melatonin as well.  The CR version is intended to be released into the body throughout the night so that ideally a small amount will be in the system for the night therefore, keeping the individual asleep.  The verdict is still out on it's effectiveness. 

SLEEP TIGHT!

-Abby

Looking at Brain Differences in Infants At Risk for Autism

New research published in BMC Medicine comes out today on brain wave differences in infants at risk for ASD. Click here to read more. Researchers at the Children's Hospital in Boston used EEGs to measure electrical activity in the brains of two groups of infants: those at risk for autism due an ASD diagnosis in an older sibling to infants without a family history of autism and ,therefore, at a lesser risk of developing the disorder. When looking at the organization of connections in the brain and density of neurons when infants were exposed to the same stimuli (a person blowing bubbles) researchers were able to distinguish between the two groups with 80% accuracy. Looking at the activity in the part of the brain responsible for language and social interactions, they found that there was less neuron firing and connections made between different parts of the brain in those infants at risk for ASD compared to the control group. Many research participants were re-tested at 6, 9, 12, 18, and 24 months of age. For reasons that are still being explored early findings show the greatest differences in the two groups at 9 months of age (the article provides possible reasons).

The research is still very much in the early stages, but findings are very interesting. The research team hopes to follow the groups over a longer period of time to measure the brain wave patterns at different ages and look at differences between those who go on to receive a diagnosis of autism and those who do not. I think we are still very far off from this being standard protocol, but it is promising to know that there is the possibility of a non invasive test that may be able to detect differences early on. I think for now it's just important that parents, caregivers, and professionals learn when behavior deviates from typical child development so that invention can begin when the first signs are recognized!

-Molly

Taming Tantrums and Meltdowns

Is it possible to have no more meltdowns?  Well, in Jed Baker's book 'No More Meldowns' he is attempting to do just that.  Jed Baker is known for his work with those on the spectrum.  He has written books regarding socials skills and transitions into adulthood.  He has great knowledge in the field especially with those with high-functioning autism/Aspergers.  Although it is not specially marketed for those on the spectrum, many know Dr. Baker's work.  He describes the book as having the ability to teach coping skills to those on and off the spectrum. 

This book looks into underlying difficulties such as:

• Sensory differences
• Speech and communication difficulties
• Concrete thinking
• Taking on other's perspectives

Throughout the book, Dr. Baker uses real life examples/situations.  He shows how to think of the situation more from the side of triggers and how to avoid the meltdown in the future.  He describes how many of the children need more guidance especially with social skills. 
A few of the scenarios he discusses are:

• morning routines
• cleaning up
• homework
• eating
• waiting
• stopping enjoyable activities
• and many more! 

There were a few things that concerned me approaching specifically children with autism:

• The book seems geared more towards those with more verbal and reading abilities (which not all individuals with autism have).
• A few of the distractions that are suggested are getting closer to a child and/or touching them along with 'bouncing on a parent's lap' which can be very overwhelming to many individuals.
• Some of the behavior is described as 'Attention Seeking' which is infrequently the case for those on the spectrum.

Overall, there are many gems in this book in terms of strategies and finding the source of the problems.  Dr. Baker is amazing at looking past the behavior (tantrum/meltdown) and seeing what is really going on.  Many of the challenges we overlook because we are so focused on the meltdown itself.  This is a wonderful book for parents and professionals!

-Abby

Toilet Training Tricks

Maria Wheeler's book Toilet Training for Individuals with Autism and Other Developmental Issues is a great resource for anyone dealing with the seemingly insurmountable task of toilet training and has tried conventional methods with no success. The book is very parent friendly with clear descriptions, photos, and case examples of real situations and strategies that have worked.

She begins by providing clues to first understand if the individual is developmentally ready and aware enough to begin the training process. A combination of developmental and behavioral principles are discussed in the book.

Examples of strategies she mentions include:

• Providing a visual sequence detailing each step of the toileting process 
• Taking data and charting when elimination occurs to begin taking the individual to the bathroom on a predictable schedule (5 or so minutes before the usual event occurs)
• Desensitization strategies for those who are sensitive to flushing or other sensory overload experiences
• Putting underwear under the diaper so the person notices when he/she is wet 
• When teaching try to take the emotion out of it (do not use punishment if there is an accident, but rather calmly help the individual clean it up, praise when the child is successful but not in an overwhelming way)
• Limit fluids before bedtime 
• Assess and address any fears or misconceptions the individual may have in regards to toileting through social stories or other visual methods
• Put a developmentally appropriate communication system in place for the individual to communicate when he/she needs to go (if the child goes independently, however, do not punish or insist on permission first because this could be a step back)
• Using a visual reward at the end of the toileting sequence may be needed to motivate some

Picture Sequence Example from
Do2learn Website

Although the author uses a lot of "lingo" including using "visual schedules" etc., few examples are provided of how to set these up-- for free pictures and more examples you may want to go to: http://www.do2learn.com/

Other common, but tricky topics the author addresses include:

Fear of the bathroom or toilet

Repeated Flushing

Failure to urinate or have a bowel movement in the toilet

Urinating Outside the Toilet Bowl

Smearing Feces

Wiping Issues

Using too much Toilet Paper

Toilet trained at home but not at other places

Regression

If you are ready to tackle toilet training once and for all, I strongly suggest 

reading this book. It is one of the most developmentally appropriate resources on this topic that we have come across.  The strategies may be time consuming to implement and require a very structured and consistent caregiver, but Maria Wheeler equips the reader with data collection charts, a social story about Toilet Training, case examples, as well as definitions, and other resources!

-Molly

Tackling the Terrible Toothbrush: Tips for autism and brushing teeth

Children in general run from brushing teeth but for individuals with autism it can be even more difficult.  This struggle can lead to tooth decay and even more pain and suffering at the dentist. A few tips and strategies to help ease children and adults with developmental disabilities:

Sensitivity to the bristles:   Every individual is different so try a range of toothbrushes with soft versus more firm bristles.  Even the size of the brush and bristles can cause aversion and at times make the individual gag. 

Battery Operated Toothbrushes:  For some this has done the trick.  There is less 'work' involved since it is doing a lot of the scrubbing for you.  This is again an individual preference as far as tolerating the 'tickling' feeling the brush can have.  There are also many that shut off after the appropriate amount of time, making it easier to know how long to brush.

Toothpaste:  Try and try again until you find the one that is most tolerable to the individual.  It is hard to predict ahead of time what will be less overpowering or offensive of a taste.  Many of the adult minty flavors are too overpowering for those with autism that I have worked with.  There are luckily lots of choices of flavors especially with those that are targeted more towards children. 

Interests:  Whether it is Thomas the Train, Elmo or Harry Potter it is typically pretty easy to find a toothbrush with that favored character.  Sometimes that alone is enough to motivate those that are more reluctant to cleaning their teeth.



Visual Time Timer

Timers:  Sand timers, egg timers, and visual time timers are great for making it more understandable how long to brush.  If brushing is a battle, start with merely a few seconds and work up to the full two minutes. 

Visual Steps:  Break it down into simple, meaningful steps.  Use pictures to show each section of the mouth and how many times to brush.  For instance, Bottom left brush 15 times, Bottom front 15 times, etc.  If the individual is having a hard time with the amount of time slowly work up to more brushing for each section.

  

Musical toothbrushes:  There are lots of varieties of musical toothbrushes on the market.  It is great about determining how long to brush and also incorporating interests.  A new favorite of mine is this toothbrush:  http://www.plackers.com/Flossers/kids-toothbrush-learn-ABCs.asp  It is a little more pricey but it has some extra 'bells and whistles'.  When the button is pushed it tells the child to get ready to brush.  It sings through the song twice allowing the parent/caregiver and individual to each have a turn.  Then it reminds the child to rinse at the end. 

Flossing:  Flossing is a pain for most of us and no exception to the individuals we work with.  Before you stick your hand in their mouth with the floss (and lose a finger or two!), try the plastic flossers.  There are some that are more child friendly but any will do.  It also makes it much easier for the individual to learn more independence in this area with the floss on the handy holder. 

-Abby

Imagiville by D.J Svoboda

I recently met artist D.J Svoboda and learned about his work as an artist and his passion for helping others with autism and those who deal with the hardships of teasing and bullying for being different. D.J is 28 years old man living in North Carolina and was diagnosed with autism at the age of three. He created Imagifriends, colorful characters he draws who all have a special purpose in society and some of whom have different mental or physical challenges but are accepted just the way they are. D.J then decided that these Imagifriends needed a place they could call home, so he created Imagiville, a community where everyone is accepted and appreciated for his/her differences. He expresses these ideas of a perfect society through his drawings and donates a portion of his proceeds to autism organizations.

I love D.J's detailed, vibrant drawings and they made beautiful Christmas cards this year! He has a variety of products, including cards, calendars, tote bags, story books, mugs, puzzles, and prints. One of his specialties is drawing "Imaginames," which is where he creates Imagifriends out connected letters of your name. To place a personalized order, check out his website here. You can also download free coloring pages on the site! D.J is truly a remarkable and talented young man who encourages kindness and acceptance, a message we all need to be reminded of from time to time.

-Molly

"Eating an Artichoke: A Mother's Perspective on Asperger Syndrome"



This book describes in great detail how the author, Echo Fling, is thrown into the overwhelming process of determining her son's difficulties.  Peeling back the layers of an artichoke is how she describes sifting through the behaviors her son exhibits and trying to see what is the heart of the problem.  The author's world spins upside down as her son's preschool teacher calls her in for a meeting to tell her that "something isn't right".

Throughout the book, Echo writes as a parent.  She describes the whirlwind of emotions that goes on through the process of trying to find an appropriate diagnosis.  I felt that she wrote all of the real problems that many families face such as misdiagnosis, difficulties paying for treatments, and what supports are needed for school; to name a few.  I do not think that this book is one of great insight but rather it chronicles the journey of one parent.  It is best to not buy this book with the expectations of strategies and interventions but rather a description of her life.  I know so many parents that felt their child was being described in the book since there were so many similarities.  The fact that there are not technical terms but rather real, raw feelings is comforting.  It is a reassuring read for parents to know they are not alone.  As a professional, I joined in the laughter and tears as I felt the situations described in her writing.  If anything it humbled me more for the obstacles that all families face.

-Abby 

Understanding Sensory Processing Disorder

The Out-Of-Sync Child by Carol Kranowitz is a necessary resource for any family dealing with Sensory Processing Disorder. I came across this book many years ago when I began working with a nine year old boy with autism who struggled a lot with sensory processing issues. Now, many years later, I have yet to find another book that so clearly explains what Sensory Processing Disorder is and what it's not. If you are new to this area, then it may take a bit longer to get through the jargon, but once you become familiar with the terms, it's a much easier read and is very informative. The book describes symptoms of the disorder both through useful checklists, and also personal case studies of different presentations of sensory processing disorder (for example, the over-responsive, under-responsive, and sensory seeking child).

 All too often sensory processing problems are misdiagnosed and children are labeled a "behavior problem." Carol Kranowitz does a great job of clearly explaining how the senses (tactile, visual, vestibular, proprioceptive, etc) affect a child's behavior and urges us to look at the whole child before we attempt to label an action and assume intent. After reading this book many parents have shared with us what an eye opener it was for them. If you feel like you already have a good understanding of Sensory Processing Disorder and are looking for a book with more specific strategies, then I would recommend The Out-of-Sync Child Has Fun instead. Although one chapter in this book is dedicated to different activities to try, the sequel does nothing but that!

Does your child have sensory processing issues? If so, then stay tuned because we'll soon have a free give-away to help the out-of-sync child who cannot stand bothersome seams!

-Molly

"Navigating the Social World": A Curriculum for Individuals with Asperger's Syndrome, High Functioning Autism and Related Disorders

"Navigating the Social World'"s title alone sums up what those on the spectrum are attempting to do.  This is a confusing world that has social and communication guidelines that are usually picked up on by others and don't have to be taught.  Often in our society we have unspoken rules that are very difficult for those on the autism spectrum to figure out. 

This book is intended for those that are working with children, adolescents and adults with high functioning autism (HFA)/Asperger's. It is great for parents and teachers alike.  I think it makes it quite clear how to teach things that come natural to most other individuals.  The author is a parent of a child with high functioning autism and was able to use her real life experiences to help others.  In the introduction to the book the author talks about the different areas associated with autism that contribute to many challenges such as: difficulties understanding theory of mind (recognizing other people's perspectives), abstract concepts, identifying emotions, stress and organization. 

"Navigating the Social World" tackles many areas of communication and social need.  Breaking down emotions and how to read others, rules within conversations, figures of speech and understanding the meaning of what the person is saying, to name a few.  This book is full of strategies of how to work on these different areas and how to practice many of these skills before being put into that situation. In the back of the book it also includes helpful worksheets, scales and charts to be reprinted.  Overall, this is a wonderful book and a needed resource for those with HFA and/or Asperger's. 

-Abby