Category Archives: autism

How an Occupational Therapist Can Help The Siblings of Special Needs Children

 

joao-rafael-662575-unsplashThe parent of one of my clients recently returned from a conference related to her youngest child’s genetic disorder, and she told me that the presentation on helping the siblings of special needs kids really only offered one niblet of advice: “Try to give each sibling 10 minutes a day of “just us” time.”

My shoulders, and my heart, fell.  Telling exhausted and worried parents that they need to find more time in their day, every day, isn’t fair.  This mom could have used so many more specific strategies.  She didn’t need another way to feel inadequate to the challenge.  When you have a special needs child, you don’t have extra time.  Some days you aren’t sure you will be able to shower and shampoo.  Even if you could carve out some time by delegating and hiring help, the truth is that living with constant worry about the present and the future, running chronically short on sleep, and perhaps still recovering from a NICU nightmare…this doesn’t lend itself to stellar time management.

There are things that really do help.  Among them are getting the right kind of assistance and support, sharing the knowledge you receive from specialists, and handling everybody’s feelings with compassion (including self-compassion) and honesty.    Occupational therapists are out there helping families deal with life, since we have a solid background in the science of occupational demands and the psychological responses to illness, injury and trauma.  We aren’t psychotherapists, but we study the science of healthy life routines and behaviors.  We also spend a lot of time learning what special needs kids need to thrive, and this includes supporting the siblings and parents of our clients.

Here are some of the things I wish that the presenters had suggested:

  1. Ask your child’s therapists to train more of your family members and caregivers.  This means the partner that isn’t the primary caregiver for a special needs child, but it also could be the grandparent or the babysitter that is the backup emergency caregiver.  There are parents who feel they can never take a break because a half-spa day would mean that no one knows how to prevent their child from falling down the steps or how to know when a child is going in the direction of a meltdown that will derail the day.  If you have a medically fragile child, more people need to know how to keep them safe and healthy.  Your child’s therapists are skilled in providing training in their area of specialization.  They may not offer it to your other family  members unless you ask for it to be done.  This is an investment in your peace of mind.  Make it happen.
  2. Find out if your child’s siblings can enter a therapy session and learn more about how to help or encourage their special needs sibling.  Therapists can teach your child’s siblings, and because they are seen as authorities and not parents, this can work well to foster understanding and interest.  Even preschool kids can learn why the baby isn’t playing with them( but she is watching) and that means “I like you”.  Your therapists are pediatric specialists and are good at helping children of all ages, even if your social needs child is an infant.
  3. Learn methods to spread your warmth and concern without promising time commitments you may not be able to keep.  Something so simple (and explained in more detail in my new book below) is to talk with your child’s siblings about your feelings of anticipation before some fun event, even if it is reading a chapter in Harry Potter.  Telling them, days ahead, that you can’t wait to be with them can feel so good.  Later, you can remind them how much fun you had.  Don’t require them to reciprocate.  You are speaking about your feelings, and if they brush it off then don’t take it personally.  Tweens especially struggle with how to respond.  They still need to hear your warmth.
  4. Express your frustrations honestly, but mindfully, to your child’s siblings.  You will both feel better for it.  You don’t have to wail and keen, and in fact I would discourage that.  You can do that with your partner or your counselor.  But your other children need to know that feeling less than blissfully grateful for their special needs sibling is normal and not shameful.  When some feelings are perceived as unacceptable, they grow in importance and sprout little behavioral problems of their own.  Start by speaking about how tired you are.  It is honest and it is probably already visible.  Mention that you feel both things; love and frustration.  You have to adjust for your other children’s age and emotional tolerance, but I promise you:  this is going to really help.
  5. Ask for help.  And accept it when it is offered.  Some people don’t think they need help, and some don’t think they deserve it.  Some think that it will be seen as weakness or laziness.  Some ask for help and get a casserole instead of babysitting.  Some get advice instead of a casserole.  And some turn down help to avoid feeling as tired and frightened as they really feel deep inside.  Think carefully about how and why you don’t have or accept help, and try doing what doesn’t feel natural or easy.  It could be the best move you make this week.
  6. Reconsider the amount of therapy and tutoring you are doing.  I know; what therapist thinks you can overdo their own treatment?  Me.  Overscheduling therapies can backfire when you, your special needs child, and the rest of your family suffer from the demands.  The time demands, the loss of participation in real life fun like hayrides and playgrounds, etc.  The downtime that any normal person needs and so few parents and special needs kids get.  That affects siblings too, in lost time with parents and exhausted parents trying to wedge “me time” into a free moment.
  7. Make choices about what your priorities are, but allow yourself to have a priority that is not all about your child.  For example, you may have to accept that your house isn’t going to be spotless, and that you may be buying rather than making most of the holiday cookies.  But if making a few batches of a precious family recipe (my best friend from college always makes her Scottish grandmother’s recipe for fruit squares) will make you feel like a million bucks, then go ahead.  Yes, life with a special needs child is different from what you expected.  But you get to have some things from your previous life that bring joy!

I am so excited to report that my newest e-book is finally done!

The JointSmart Child:  Living and Thriving With Hypermobility Volume One:  The Early Years is designed to empower the parents of hypermobile kids ages 0-5.  There are chapters on picking the right high chair, toys, even pajamas!  One section is just on improving communication with your family (including siblings), teachers, therapists and even doctors.  No other book answers questions that parents have about finding good eating utensils and how to navigate playdates and social events more successfully.

It is available on Amazon as a read-only download and on Your Therapy Source as a printable and click-able download.  Look for more information and a sneak peek at the ways every parent can learn what therapists know about positioning here:The JointSmart Child Series: Parents of Young Hypermobile Children Can Feel More Empowered and Confident Today!

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Binaural Beats and Regulation; More Than Music Therapy

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When you have so much to choose from, how do you pick the right one?

For people who have read about or tried Quickshifts  Quickshifts: A Simple, Successful, and Easy to Use Treatment For Processing, Attention and Postural Activation, you may be wondering what all the fuss is about listening on headphones versus speakers, and why the music has this echo-y tone to it.

The use of binaural headphones allows the ears to hear the full range of sound with as little interference or absorption from the environment.  It is important that the left and right ear are hearing the sounds separately.  The echo-y sound?  What you are hearing is the BBT; binaural beat technology.

It isn’t new.  BBT has been used and researched since the 70’s.  It is out there in many forms; you can even find it on YouTube.  There are enough studies done to prove that this technology has real effects on alertness, attention and mood.  It makes sense that therapists would like to use it to help kids with self-regulation issues.

BBT is helpful for learning and self-regulation, but only if you know what brainwave state you want, and why you want it.  And that is where therapists can help.

But which one to use?  I only use Quickshifts in my therapy sessions.  

Why do I prefer Quickshifts to deliver BBT?

  • Quickshifts entrain an alpha brainwave state.  This state is associated with calm focus and, wait for it, interoception.  Yup, the biggest new word in occupational therapy is interception, and there are some excellent studies done by neuropsych researchers that indicate that alpha brainwave states increase interoception.  Yeah!  Interoception is the ability to perceive internal states, and this includes basic physiological states such as fatigue, hunger, and the need to eliminate.  So many of our clients struggle with knowing what they feel.  Quickshifts can help.
  • Alpha brainwave states are theorized to act as a gating mechanism for anxiety, and anxiety isn’t a great state for kids with ASD, SPD, or, really, any of us.  Anxiety is a component of so many diagnoses, and it isn’t easy to do cognitive strategies like CBT or DBT with children under 10 or 11.
  • The music used in Quickshifts is very carefully designed to enhance specific functional states, and every occupational therapist is all about functional performance.  We don’t want just relaxation; we want engagement in life.  The way that Quickshifts uses music allows BBT to address specific behavioral performance abilities.  There are albums for attention, for movement, and for regulation.  They all use BBT.  At any particular time, one functional goal will predominate.  I don’t need to induce a meditative state in a child that is working on handwriting.  I need calm focus and movement control.
  • The avoidance of pure tones means I don’t have to worry about seizure activity in most kids.  If a child has frequent seizures, I can be confident that I am not increasing them.
  • The choice of instrumentation on Quickshifts albums is often more grounding than other BBT choices.  I want kids to feel grounded, not floating on a cloud.  That state makes it harder to speak, move, etc.  Being jolted into a high level of engagement without grounding isn’t great either.  Remember:  OT is all about functioning.  That happens at that “just right” point of arousal.
  • There is a progression of instrumentation and rhythm on many Quickshift albums that guides the brain into more environmental awareness and postural activation, but it is done gently.   Getting to an alpha state is a goal, but improving functional performance with less risk of overload is most important to me.  I have to give kids a chance to leave our session in a good place.
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He picked out his perfect pumpkin!

Does Your Child “Trace” the Room’s Perimeter or Hate Big Spaces? There is a Sensory-Based Explanation

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Space; the final frontier?

When you see it, it looks like Helen Keller crossed with a Roomba.  A child enters a space, even a familiar space, and runs the perimeter without stopping to play or examine things.  They may trace the room with their fingers, or repeat this process many times before they “land” and engage in some kind of purposeful activity.  If they get upset or challenged, they may resume this behavior.

One explanation for this behavior is that it is a solution to spatial processing difficulties.  When a typical child over the age of, let’s say 14 months, enters a room, they use their visual and auditory skills to tell them about the shape, height, and contents of the room.  As we mature, we use higher-order sensory input to inform our awareness and thinking.  We use sound in particular to tell us about the space to our sides and behind us that we cannot see.  Kids with ASD and SPD are stuck using immature types of information, and need to use them more often and more intensely to get the same knowledge.

How does this feel for them? Think of Notre Dame cathedral (before that awful fire).  The soaring ceilings and the long aisles create an other-worldly feeling you cannot escape.  Your brain knows you are not in your living room, or even in your own place of worship back home.  The medieval architects knew this too.  That was exactly the effect their were aiming for.  To set you back on your heels with the wonders of G-d.  How?  By making the spatial characteristics very unfamiliar and difficult to square with everyday experience.  To have you feel smaller and less in control in the presence of the almighty.

Now imagine that every space you inhabit gives you that feeling.  You enter a room and your eyes go everywhere.  You want to walk around to give yourself more information about where you are.  You don’t, but your nervous system is suggesting it.  You feel off balance and vulnerable.  Sound familiar?

What can you do?  Treating spatial processing issues isn’t easy.  Addressing limitations in vestibular and visual processing can really help, but I think that sound-based treatments are some of the easiest and most effective.  I use Quickshifts effectively to address spatial processing issues  Quickshifts: A Simple, Successful, and Easy to Use Treatment For Processing, Attention and Postural Activation.  Of course, it is best to address all the sensory processing issues any child has to get the best results.  You want to cement in the skills of better sensory processing by achieving good functioning in multiple situations.  But spatial processing problems have to be addressed to achieve a calmer and more organized state.  You want every child to feel safe and supported wherever they go!

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Effective sensory processing treatment helps kids feel safe in big spaces

Quickshifts: A Simple, Successful, and Easy to Use Treatment For Regulation, Attention, and Postural Activation

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Every child loves music, but not every music is therapy!

What if you could add a sensory-based treatment that could target specific sensory and behavioral goals, doesn’t require expensive equipment or a large therapy space, and you could see the effects within a very short time?

Since adding Quickshifts to my therapy sessions, I have been able to address some of the more difficult behaviors and sensory processing issues I encounter in EI.  Very young children are often afraid of being on therapy balls and swings, and they don’t always tolerate the Wilbarger or Astronaut protocols Why Is The Wilbarger Protocol So Hard To Get Right?.  But everyone can listen to music.  Enter Quickshifts.

I am primarily using them over speakers, since even older kids are struggling with wearing headphones.  I find that this isn’t preventing progress, and I periodically try to reintroduce headphones with children over 2.  They can change so quickly that I never know when “NO” will turn into “maybe”.

Every Quickshift album uses brainwave entrainment.  The use of binaural beat technology (BBT) for entrainment of an alpha brainwave state has really made a difference with the kids who display predominantly anxious or dysregulated states.  Read more about BBT in Binaural Beats and Regulation; More Than Music Therapy.

Why Modulated Music Wasn’t Working For Me

I stopped using Modulated music a long time ago.  Not because I didn’t think it was an effective treatment.  Because I couldn’t get any compliance at home, and I saw very little progress with use only in my therapy sessions.  There was often a learning phase, in which I had to adjust the amount of listening time to prevent overwhelming young or very challenged children.  Using them only in treatment sessions seemed to make little meaningful difference in my little customers.  Families were resistant; even the families that really wanted to use this music.  The way Modulated music needed to be scheduled and used (two daily 30-minute sessions, 2-3 hour wait before sleep times and between listening times) made it almost impossible to use with very young children at home, regardless of how willing parents seemed to be.  And very few parents were that willing.  Maybe they would be able to do insulin injections on a schedule, but not therapeutic music.  I hated begging, so I had to find something easier that worked well.

Quickshifts:  More Flexible, More Easily Tolerated, More Effective in EI

Quickshifts have been much more flexible, but just as successful.  Maybe more!  They can be used often throughout the day, any time of the day.  I haven’t seen one small child react in a way that indicated that they were overwhelmed.  The ability to target specific types of sensory-based goals means I can deliver results the parents can see.  the emphasis on alpha brainwave states seems to deliver an extra layer of calmness.

Parents are happy to be able to download the albums onto their phones and use them to improve transitions, sleep, attention and more. The use of technology to entrain an alpha brainwave state means that if the album isn’t a perfect fit, I don’t get an overwhelmed child; there is always some degree of improvement in regulation and arousal.  But when I have seen kids generate more postural activation, calm down and even laugh, or tune into their environments in ways they never have before Quickshifts, I wonder why I waited so long to get this treatment on board.

If you are tempted to go out and buy these albums without the guidance of an OTR that is trained in sound therapy, please reconsider.  The reason that I have had such success with Quickshifts is not just because this treatment works.  It is because I use it as part of a whole sensory-based protocol, in which I can select and prescribe the right music to be used at the right time.  There really is a reason to have an OTR help you.  You will get better results, avoid problems, save time and money, and have someone trained in treatment guiding you.  Not Dr. Google.

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Does Your Special Needs Child Have a “Two-tude”? Its Not Just the Age; Its Frustration Minus Skills

 

patrick-fore-557736I spend a lot of my work week with toddlers, and they can be a challenge.  One minute sunny, the next screaming because their cookie broke.  Special needs toddlers can have a “tude as well, but many professionals sweep it under the rug.  They tell parents that this is normal, and that they should be grateful that their child is going through a completely normal stage of development.

Except that many parents who have already raised typically-developing kids KNOW that there is a difference with this child.  It could be the intensity of the ‘tude, or the frequency of the meltdowns, or the types of events that trigger the tantrums.  OR ALL OF THEM!  Parents know that this doesn’t feel the same, but they often shut up when they are told that it is so normal.  Perhaps their eyes and ears and memory isn’t correct.

They aren’t wrong.  Their perception that something is a bit different can be totally correct.  And the reason(s) are quite obvious to me.

Special needs kids come in an almost endless combination of needs.  Some are physical, some are communication needs, and some are cognitive or social skill needs.  Some are all of these.  Having challenges in moving, speaking, comprehending language and/or concepts or struggling to interact will create more frustration for every single day of a child’s life.  That’s the reality of disability.

The image of the placid and sweet special needs child, patiently waiting to be assisted and supported is just that: an image.  Most kids bump into frustrating barriers every day.  The toddler that has just learned to walk but can’t run, the toddler that is talking or signing but still isn’t understood by their older brother, the toddler that cannot handle a change in routines…it goes on and on.

Typical toddlers spend less time frustrated that they are unable to accomplish simple skills.  The typical 14 month-old that can’t tell you what he wants becomes the 18-month old that can say “cakker, pease” for “cracker please”.  A special needs child could be 4 years old and still struggling to explain that he wants another cracker.  That is a long time to be frustrated.  The typical 26 month-old that can’t run after their brother in the backyard becomes a runner at 30 months.  A special needs child may not run for years.  That is a long time to be left in the dust when everyone is running.  Is there any wonder that parents see more frustration, more tears, more stubbornness?

My saddest story of failed inclusion is when a family placed their special needs child in a toddler development group with mobile kids.  Even though this child had a personal aide, he still watched as his peers got up from the snack table and ran outside.  They left him with the aide, who then carried him outside so he could WATCH his peers climb and run.  He became distraught at home when he was left alone in a room.  A puddle of tears.  It was so sad to see.  No one had thought of the emotional cost of inclusion to this toddler, only the social and academic benefits.

What can be done?

I teach families the Happiest Toddler on the Block strategies as soon as they are appropriate.  Dr. Karp’s techniques build a child’s skills while enhancing interpersonal connections Teaching Children Emotional Regulation: Can Happiest Toddler on the Block Help Kids AND Adults?.  Yes, sometimes you have to provide consequences for aggression, but mostly it is about building frustration tolerance and emotional intelligence.  For everyone.  I use these techniques all day long.  I could never handle so many toddlers for so many years without them!

Looking for more information on special needs toddlers?  Read Need to Support A Child’s Independence? Offer to Help Them! and Safety Awareness With Your Hypermobile Child? Its Not a Big Thing, Its the Biggest Thing.

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Why Is The Wilbarger Protocol So Hard To Get Right?

 

michael-mims-134037-unsplashThe Wilbarger Protocol has been a staple of therapeutic treatment of sensory processing disorder for decades.  I will reveal my age, and admit that I learned directly from Pat Wilbarger.  She was an amazing teacher and a highly skilled clinician to see in action.  But I have lost count of the number of times parents have shown me how they have been instructed to administer deep pressure brushing and joint compression, and I had to decide exactly how to respond in a professional manner.  My initial internal reaction is often something akin to “STOP!”

So many parents have been incorrectly taught.  They are wondering why this technique hasn’t worked very well for their child.  Internet-savvy parents have consulted “Dr. Google” and heard both positive and critical remarks about the Wilbarger Protocol from other parents.  They are discouraged; concerned that their child is too impaired for it to work, or they are just not coordinated enough to be successful.

Well, I can tell them that the Wilbarger Protocol won’t work well if you don’t do it right.  And you won’t do it right if you weren’t shown correctly.  I suspect that, like a child’s game of “telephone”, their former therapist learned the method from her supervisor, and her supervisor learned the technique from HER boss or teacher.  And THAT therapist learned from her clinical director.  On and on, until there is no understanding of the concepts that form the basis for the technique, such as Gate Theory, or that Pat left the cranial compressions behind in the early to mid-90’s due to the risk of cervical injury.

This technique isn’t easy to do on toddlers or children with ASD.  Being comfortable with  manual treatment helps.  Understanding what not to do helps.  Knowing how to create a receptive state in a special needs child helps.  It takes a level of confidence, experience, and the ability to understand how to adapt it to the specific client without losing the benefit we are seeking:  neuromodulation.  It is possible to do it wrong and unfortunately increase sensory sensitivity or put a child into overarousal.  It is also possible to create joint or tissue damage (likely small, but still possible) with too-vigorous force.

Pat used to have her teaching assistants assess every participant in her training courses to ensure that therapists left knowing what to do and what not to do.  She couldn’t control what happened in anyone’s clinic or school.  If therapists or parents find that they aren’t getting the desired results from this treatment technique, I would encourage them to do some research and find older therapists that may have had direct contact with the inventor of this protocol, or at least a therapist that learned from someone that had the good fortune to learn directly from Pat Wilbarger.

Looking for more information about the Wilbarger Protocol?  Read Can You Use The Wilbarger Protocol With Kids That Have Ehlers-Danlos Syndrome? for some methods to adapt this brilliant technique for children with connective tissue disorders.

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Does Your Child Still Chew on Clothes or Toys?

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Babies love to munch on their toys.  They nibble at book bindings, chew the heck out of their loveys, and some little ones really love to chew their pacifiers.  As they grow, most children let go of this behavior.  Chewing and biting for sensory exploration and state modulation diminishes and a child’s behavior evolves into thinking, communicating, and smooth internal state regulation.

But some older kids slip their sleeve or shirt collar into their mouth whenever they can, and are left with a soggy mess by the end of the day.  They suck on their markers or the grocery store cart.  Their toys and pencils are ragged witnesses to the continuing use of oral stimulation, long past the first year or two of life.

Why do they do this?

Some kids are seeking to fill an oral cavity that is less stimulated due to low muscle tone, hypermobility and/or limited sensory discrimination.  Shoving a sleeve in there provides that sensory boost as muscles, skin and ligaments stretch.  Children that need more sensory input due to inactivity, boredom, physical limitations and illness use oral input as an always-available and independent option.  Other kids use biting and chewing to modulate their level of arousal (and open their eustachian tubes, BTW!).  While most OTs know about the modulation piece, the way biting and chewing impact hearing and even vestibular health isn’t so commonly considered.  Biting can stem nystagmus for some kids, and it can lessen dizziness or help a child move their eyes apart as they watch objects in the distance (divergence) for reading the board and for sports.  For kids that use biting well after the toddler biting phase should be over, evaluating any ocular (eye) or ENT issues can be helpful.

Exploring the level of stress in a child’s life outside the classroom or therapy clinic is another consideration.  Biting and chewing are calming proprioceptive inputs that a child can use when they are anxious or fearful, or just uncertain. The jaw muscles have innervations to the autonomic nervous system and the auditory system.  Kids who struggle with language processing can use biting and chewing to assist them in listening to you or in tolerating sound.   It may not be possible to impact the stress of divorce, moving to a new home, or adding a newborn to the family, but appreciating these situations as factors in behavior can improve how families, teachers and therapists respond.  Older children could be trying to modulate their level of arousal without causing trouble by running, jumping or yelling.  Chewing is less likely to be disruptive in a classroom setting.

What Can You Do Once a Chewing Habit is Established?

Once oral sensory seeking behavior takes hold, it isn’t easy to stop.  It can be very satisfying and accessible, particularly for young children.  Addressing the core cause or causes means taking things one step at a time.  Many children do well with a multi-sensory diet added to their daily activities.  More physical activity or more frequent activity breaks can help.  I find that more vestibular input in particular can be powerful.  Using whistles can be helpful when chosen well and supervised for safety and overall modulation.   Some children need to become more aware of their behaviors; older kids can use some of the “How Does Your Engine Run?” concepts to take responsibility for their behaviors and independently seek alternative sensory input.  Kids that learn mindfulness techniques can incorporate those into their program as well.

The use of chewing objects can help, but there are three concerns that have to be addressed:  hygiene, safety, and speech.  A child that sucks or chews on any object isn’t going to monitor its cleanliness, so make sure you use non-toxic soap that is carefully rinsed off.  A chewing necklace should never be worn while sleeping due to safety issues, nor can it be used when it could become snagged on branches or sports equipment.  And finally, having something in the mouth, whether it is a pacifier or a chewing toy, will minimize and alter speech if it isn’t removed for communication.  Never allow a child who is talking or learning to talk to devolve into head nods so they can keep chewing.

Looking for more information on sensory issues?  Read Sensory Sensitivity In Toddlers: Why Responding Differently to “Yucky!” Will Help Your Child and Weaning the Pacifier From An Older Child.

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